Lucysnoidblog

They couldn't get it all ... so what?

2012-02-01T21:39:00.000-08:00

Even Partial Tumor Removal Can Improve Your Life

Dr. Liu reaches conclusion: surgical intervention, even if incomplete, improves QOL and OS

Dr. Eric Liu, M.D.

"We removed the SBO (small bowel obstruction) but then we discovered a metastatic condition so we didn't do anything more," said one surgeon to another at a conference. I was in the elevator and could not keep from hearing the exchange. "Why," the other surgeon asked, "did you not attempt to remove any of the other tumors?"

"That's not what we do," the first surgeon answered. "If there's any spread, we just close them up."

Unfortunately, this is the protocol for many hospitals, practices, individual surgeons and surgical 'teams. They don't know or don't believe that reducing a neuroendocrine cancer patient's tumor burden - even if they can't "get it all" - is the correct path.

At the recent NETs symposium in October, Dr. Eric Liu, head of the Vanderbilt University's NETs clinic, outlined the reasons why partial removal (also called de-bulking) is appropriate in most NETs cases.

Dr. Liu presented data compiled by the well-known Kenner team, composed of Drs. Woltering, Boudreaux and Wang, near New Orleans. The group aggressively treats metastatic carcinoid cancer by removing tumors whenever possible.

Liu's points were:

Debulking surgery, even if not complete, improves Quallity of LIve (QOL.)
Disease recurs regardless of therapy: 84% of patients show recurrence after five years; 94% show recurrence by 10 years.
Despite recurrence and incomplete resection, Overall Survival (OS) improved with surgery.

*About 20% of NETs patients overall survive five years; 15% go on for 10 years without intervention.

Look what happens with intervention

After liver resection 61% showed OS of five years; 35% OS for 10 years.

After partial resection 74% had OS of five years.

Parts of this message may be sobering. It would be great if the disease could be cut out and never show up again but that's not realistic. Not yet. Even without surgery, twenty-percent of us will still be alive in five years. And 15% will last another five - to hit the 10-year mark.

But here's the good news: having the liver resected ups your chances of living five years - you're four times more likely to celebrate five years and more than twice as likely to hit the 10th year alive after liver resection.

First-line treatment

A lot of discussion in medical circles turns around which interventions should be tried first. Do you give drugs first to stop the progression, then operate? Or do you use a liver-directed therapy like embolization to get the mass smaller, then attempt surgery?

While every case of NETs is different, Liu says for most patients"

Surgery first - take out all you can.

Embolization next, if needed

Palliative care - such as octreotide therapy or some other drug.

Conflicting opinions happen

These remarks are still regarded as preliminary and they are bound to draw detractors. For example, there is a group of NETs specialists who believe embolization could be a first-line treatment. There's something to be said for that because it gets symptoms under control so surgery to reduce the tumor burden will not be so precarious.

There is no one-size-fits-all solution

NETs is one of the most variable and individual diseases we know. People with mid-gut primary usually have liver involvement sooner or later and the well-recognized "carcinoid syndrome" meaning flushing and diarrhea.

Patients with rectal primary often have no further symptoms and no metastasis for many years - perhaps never. They almost never have flushing.

Those with lung primary may have tumors in the mediastinum or spine before they have liver mets. Or these growths may all pop up at one time. Drugs that work to stabilize tumors in one patient do nothing for another with the same set of symptoms and the same type of primary tumor. In fact, one tumor may be different in cell structure and secretions from another tumor in the same location - in the same patient.

That insight was presented by Dr. Thomas O'orisio (U of Iowa) and Dr. Eugene Woltering (LSU) at a NETs patients' conference in Dallas in October. I could hear minds blowing in the quiet conference room.

Things can change

As research continues, some reports from the NETs symposium will be refuted; some will be upheld. These presentations for the most part, are pre-publication. They are reports from the front line. In time, there will be published reports; theories may change, depending on the amount of scientifically proven information the studies contain.

No More Wait and See

At least data refutes some old ideas about NETs. There are still a depressing number of doctors who believe NETs should not be treated at all ... that the best way to manage a NETs case is to wait until the patient is in life-threatening condition before attempting surgery. Others believe it is not worthwhile to remove tumors that will recur, especially when the disease is eventually terminal. Time to refute those concepts. Humane medicine upholds quality of life and sustains it as long as possible.

*From the SEER database- Surveillance, Epidemiology and Eventual Results, which tracks all reported cases of cancer from initial diagnosis to death.

2012-01-30T19:15:00.000-08:00

MRI - Is it really harmless?

A carcinoid patient recently reported so much pain after MRI (magnetic resonance imaging) she could not straighten her spine and must remain hunched over. I recalled reading some similar complaints and a quick Google search found several accounts of people who had burning, itching, dizzy spells, headache, uncontrollable eye movement, nausea and pain during and after MRI.

The scan is widely used to detect abnormalities in the body. Most literature about MRI stresses it's completely safe and does not cause pain. It was considered so safe that until recently in Texas, you could get an MRI without physician's orders - so long as you could pay.

But people are different and nobody knows whether every person on the planet will have the same experience to a scan or any other medical procedure.
The most common activity - getting a blood draw, for example - is painless to me but causes some folks to lose consciousness, experience pain and many other adverse reactions. It seems reasonable that at least a few humans will react adversely during MRI.

While I do not have severe symptoms, I have felt nauseous and completely drained of energy following MRI. I've had probably a dozen MRIs and each one left me feeling this way.

Why do I feel sick after MRI?
I've mentioned glucagon, often injected to stop gut motility during MRI. Avoid it if you have any bad reactions during MRI. Some radiologists use it routinely. Others not it at all.

I found several theories on why some people feel ill after MRI while others are unaffected.

Unknown or unrecognized bits of metal inside the body. They can remain after surgery, injuries and accidental ingestion - like the time I swallowed a nickel, a penny and a quarter to impress my older cousin. I was three.

Tattoos - sounds improbable, but some tattoos applied many years ago contained a metal substance that could cause a reaction during MRI.

Electromagnetic sensitivity - this is a growing diagnosis although little is known of its causes or cures. It appears some people are more sensitive to the electromagnetic fields we encounter 24/7 in our modern world. These fields can be tiny - like a small radio. They can be enormous - those gigantic electrical towers we see marching across the world, microwaves relayed from place to place, the electrical output of gadgets like cell phones and surveillance systems. The "power grid" itself may be a mega-electromagnetic field none can escape.

Environmental illness - it's real and has many sources. Women tend to be more sensitive than men to such things as off-gassing of formaldehyde in modern building materials, carpeting, upholstery and computer-emitted radiation. It may be they are just more likely to report these reactions since more women than men seek medical care - at least in the US.

A mix of bad stuff
Often the combination of toxic factors cause illness.

Lucinda Grant (http://www.tldp.com/issue/179/emf179.htm) reports at length on her exposure to mold from a fish tank built into a wall of her house. She, her husband and her dog developed chronic fatigue and many of the symptoms associated with adrenal failure. They notice a large electrical line above their home in California. They moved to an apartment and immediately improved but were not restored to full health for a while longer.

Mold is well documented as an environmental toxin. That alone might have caused Lucinda to become ill but the electromagnetic field may have pushed her toward more serious problems.

I'm not an authority in any area, really. But I think it is likely that someone already ill with carcinoid cancer might be extra-sensitive to the magnetic fields and pulsation inside the MRI tunnel. It's significant that pregnant women are advised against having MRI during the first trimester.

Carcinoid cancer+environmental toxcity+MRI=adverse reaction?
It's very difficult to get a doctor to listen to your complaints if he or she has already decided that MRI is completely safe for everyone. Rather than trying to convince them, you might want to consult a physician specializing in environmental illnesses.

Much of the medical community in the US doesn't regard electromagnetic fields as a cause of illness. But other countries (especially Sweden) restrict overhead electrical conduits and don't allow human habitation near large-scale electrical equipment and machines.

Lucinda Grant, who finally found health in the sea breeze of Martha's Vineyard, is director of the national support group Electrical Sensitivity Network and author of the books The Electrical Sensitivity Handbook and Workstation Radiation.

Lucinda Grant
Electrical Sensitivity Network
P.O. Box 4146Prescott, Arizona 86302 USA

The American Academy of Environmental Medicine (AAEM)

www.aaemonline.org/

Is a non-profit medical society committed to educating physicians on the cause and effect relationship between environment and ill-health. AAEM covers a range of topics including genetically engineered plants to the dangers of contaminated drinking water.

The bad old days

How many of us worked on computers with cathode ray tube (CRT) monitors? Most of these machines were quietly replaced when it was discovered they emitted an unhealthy dose of radiation to anyone sitting before them.

Treatment for most environmental illnesses is a giant missing link in the medical continuum. Moving away from the offending source is obvious but that doesn't necessarily undo the damage and it may not be practical. Does it really help to move into the country if you still have a cell phone, a microwave oven and a big screen TV?

What's a noid to do?
How do you and your doctor monitor the progress of your disease? How will you know it's time to change your treatment plan? I would discuss having fewer scans per year; maybe go to every other year if your disease is stable and you have no other symptoms.

When I was diagnosed in 2006, the standard NETs protocol at a major US cancer center was CT scan three times a year and Octreoscan once or twice a year! Now, most authorities agree this is far too much imaging unless the disease is rapidly developing. Even if it's galloping into high gear, I'd consider the treatment plan. During the time you are adhering to a course of treatment (which might be six months to a year) you might be able to skip the imaging until the course is done or until there is some other indication of progression.

Then, you want to choose the most effective scan possible. Unfortunately, the most revealing scan for NETs, 68-Gallium PET-CT, is still not widely available. Vanderbilt University and the University of Iowa are conducting the scans under clinical trial protocol.

Whether it is from CT or MRI, Octreoscan or some other procedure - if you are ill or in pain afterward, PLEASE contact the FDA to report an adverse reaction: www.fda.gov/Safety/MedWatch/HowToReport/default.htm

If you don't speak up, nothing will change.

.

2012-01-28T22:01:00.000-08:00

A Doctor Reviews NETs Symposium

Dr. Jerry Fain, M.D.

Personal Loss Made Him Aware of Carcinoid

Dr. Jerry Fain, M.D., hematology-oncologist at Texas Oncology in Austin, Texas became dedicated to learning more about neuroendocrine carcinoma after his mother died. At age 84, she was diagnosed with neuroendocrine tumors too late to extend her life beyond a few months.

"Everything changed for me," Fain told the Central Texas Carcinoid Support Group at a meeting in Austin, Texas Jan. 29. "I decided to learn all I could about carcinoid at that point." Fain is one of a handful of physicians routinely treating NETs patients in the Austin area. This was his second time to address the support group.

"What you must understand," he told the group, "is that NETs patients represent only one percent of what walks into an oncologist's office."

Fain reported some of the highlights of the October 2011 Neuroendocrine Tumor Symposium, in Minneapolis. His insight was both encouraging and frustrating. While consensus is building toward a standard of NETs care in the US, there are still many doctors who disagree, sometimes heatedly, about the best approach.

"It's important for you to know that major treatment centers do NOT agree on how you (carcinoid patients) should be treated," Fain said.

The symposium is held mainly for medical professionals to discuss the latest research, most of which has not been officially published. Since NETs is increasingly diagnosed, more doctors are being drawn into research and treatment for this type of cancer. The annual symposium is a deluge of information - some of it simply posted in highlight form with printed hand-outs to explain how the writers came to their conclusions.

Fain said there were many speakers, most of them talking rapidly to allow all presenters to be heard. Controversy emerged over the relevance of tissue resistance typing. This is the practice culturing tumor cells, then exposing the culture to various forms of chemotherapy to see which drugs might be more effective in killing or disabling the tumor cells. In some centers, tissue typing is routine. In others, it is not done at all.

Chemo-embo vs SIRT
A U. of Iowa study of liver directed therapies indicates chemo-embolization may be more effective than isotope-eluting spheres, also called SIRT or, in this case, SIR-spheres. "This is just a study of 42 patients from one center and the data is preliminary," Fain reminded the group. The report covered a 10-year span and showed increased time to progression (TTP) of 33.4 months and overall survival (OS) rates at 68.7 months after HACE (hepatic artery chemo-embolization) compared to 26.8 months OS for SIRT patients.Twenty of the 42 patients required a second intervention and 45% made it to the five-year mark. Perhaps the most startling finding is that there was no significant difference in OS after the first liver-directed therapy, regardless which treatment was used.

PRRT and Low Grade NETs
Another Iowa presentation indicated a high rate of OS for patients who got Y-90 or 177-Lu, also called PRRT. The procedure is now available in the US with 177-Lu at only one location in Houston. "The take-home message from this study is 128 months of OS," Fain said. The Iowa study shows a higher survival rate than the current accepted SEER data's OS of 94 months.

Ingredients for a Standard of Care
Fain summed up the main message of the symposium: "We're pretty agreed that we ought to be doing something," he said. "We think resecting the liver should be a standard of care." Not all surgeons in the US agree. Many consider tumors, especially more than one and especially if there are tumors in the liver - a sign of imminent death. Why remove something when the patient isn't going to live long enough to make the job worthwhile?

This concept morphed into a doctrine of not removing any tumor other than what must be done for palliative care. In other words, a tumor obstructing the bowel may be surgically removed but if there are other tumors, they are left in place. The ripple effect of this attitude has led to question, "why even find the primary?" Fain said. "We now know that if you do remove the primary tumor, the benefit is less adhesions, less tumor secretions and a better quality of life for the patient."

Unlike many other metastatic cancers, NETs can allow patients to live a long time if these tumors are removed, he added.

Big News for Lung Noids

TYPICAL pulmonary NETs

5 mm margins are OK when excising neuroendocrine tumors in the lung, not necessary to take out the whole lobe; just excise the tumor(s) which often are tiny (0.5 cm in 68% of cases.) Removing less tissue means shorter stay in the hospital and faster recovery.
Five to 20% will spread to the lymph nodes but it is unclear what this means for survival; it may not be the same as when tumors spread from the gut to another location.
If you have more than a single tumor, GET A BIOPSY OF ANY MEDIASTINAL LYMPH NODES at the time of surgery. It may not be advisable to remove these nodes but a biopsy may help you down the road.
Got a low Ki-67 or mitotic rate? No chemo needed.
Only 1/3 show on octreoscan, but if they do - octreotide can be considered.
Laser surgery, robotic assisted laparoscopy, both feasible.

ATYPICAL pulmonary NETs are thought to be more aggressive.

Lymph node involvement is more common and more likely to affect OS.
MEDIASTINAL LYMPH NODE DISSECTION MANDATORY
1st treatment of choice - octreotide
2nd - Cisplatin and Etoposide
3rd Xeloda and Temodar

Even though the condition is more rapidly developing, two year OS is 91%.

Diffuse Idiopathic Pulmonary Neuroendocrine Cell Hyperplasia (DIPNECH)

Is getting more attention at Mayo.

It may be a precursor to pulmonary NETs but nobody knows for sure. It usually looks like uncountable very small polyps or bumps on the inside of the lungs, Mayo Clinic found 93% are women age 45-84. One third have a primary site outside the lung. THE GOOD NEWS IS: AT 59 MONTHS, NO DEATHS WERE REPORTED.

CT Scan Controversy

In some countries like China, you can get a CT for $100 or even less. But it's usually on an older scanner with far fewer slices than those used in modern US radiology suites. It can happen in the US, too - if the place has older equipment. If you have a large tumor or no tumors - no problem. But if you're looking for something small like a lung tumorlet, it can miss the image entirely. Some radiologists don't believe this is much of a problem. Others do.

Editor's note: I had a 2.4 cm mid-gut tumor and several other growths by the time I was finally diagnosed. I'd had many scans and tests but nothing was detected. A 64-slice CT scanner located the tumor. I doubt the previous CT scanners had that kind of horsepower. Ask how many slices before you get another CT and go to the place with the most slices per inch. 264-slice is available.

Endoscopic Ultrasound (EUS)

It's getting increasing use and shows a lot of promise in detecting tumors and other abnormalities during surgery, especially. But it takes a lot of training and not all places have EUS.

Red Tape
Fain indicated finding and removing the primary whenever possible - like liver resection - should be part of the standard of care. But that's not always the case, even when physicians want to perform such procedures.

In nearly 20 years of oncology practice, Fain says he has never encountered so many barriers to delivering the best quality of care. Insurance companies now routinely refuse to cover some procedures and others require several attempts to get prior authorization.

"My nurse spends an inordinate amount of time on the phone trying to get prescriptions approved," Fain said. Medicare has become especially problematic, he added. But even getting proper lab work is not always simple.

"We're told the codes are incorrect, even though we know that's not true," Fain said. "Too often, we're told our treatment plan will be sent for peer review. I fear all these things together will lead to rationed care."

EDITOR'S NOTE: Please remember that these statements are subject to change and these statements are from my notes and recollections of the meeting. This is preliminary data and much more study will be required before most of it achieves widespread acceptance. But talk with your doctor, research on your own, look for the topics mentioned and stay informed. You are your own best advocate.

2012-01-26T13:55:00.000-08:00

BRP Diary - What I Learned Today

Just a brief post to warn those without carcinoid who might be considering BRP - be sure to mix it with Metamucil or some type of fiber preparation. This is ONLY to those who are either not on Sandostatin (octreotide) or who do not have neuroendocrine tumors.

If you're normal, you NEED bulk to avoid constipation. Black raspberry powder is a great way to control diarrhea but if you don't need that kind of control, you'll be locked up tighter than Lindsay Lohan after her next court appearance.

BRP is healthful for all
BRP has many healthful benefits for those who do not have diarrhea. Studies show it prevents polyps from growing in the colon and it may prevent some types of gut-related cancers. BRP greatly aids people with Chron's disease. It's one of the only non-drug treatments that does lessen the inflammation and diarrhea associated with Chron's.

Of course, it helps folks with neuroendocrine tumors, especially anyone who's had a bowel resection. It slows the digestive process and soothes the innards. It's natural, so there are no drugs involved. It takes about two or three days for the benefits to show.

Warning

Again - if you have normal bowel movements - it will make you constipated if you don't add some fiber such as Metamucil.

I'm taking a holiday from Sandostatin. I wanted to see if it contributed to weight gain. I've dropped three pounds since Dec. 28. But I worry about the effects on my tumors. Will BRP be enough to keep them from growing?

Stay tuned. I'll be getting another scan pretty soon and that should show something one way or the other.

Texas Persimmon Tree in my back yard. These trees are tough but beautiful. Their fruit is small, almost insignificant. But they endure drought, wind and deer, who rub their antlers against their sturdy trunks,

Photo (c) Lucy Wiley

2012-01-25T10:56:00.000-08:00

Homage to Steve Murrah and Ghana

Ghana casket carved and painted wood

Steve and I joked about going to the Musuem of Funeral History in a Houston suburb to see the fabulous wooden caskets from Ghana. We laughed a lot about how we would go into the afterlife and who would be around to see us off. He sometimes came to Houston to visit a cousin and get treatment at M.D. Anderson. He was supposed to tell me the next time he was coming to Houston but I never got the call.
Steve died Jan. 15.

I was drawn to Steve because he was brave enough to keep trying new things to buy time including PRRT and Pazopanib, which turned his hair and part the eyelashes on one eye totally white. The look was sort of Mad Professor-Back to the Future-quirky and it fit his personality like the Argentine leather jacket he sometimes wore.

I also enjoyed Steve's twisted, dark sense of humor, displayed mostly in his writing. His blog is closed now and I have not seen it for some time but he used to poke fun and disparage any number of sacred medical cows, which made me laugh.

Steve and his wife, Lissie, attended the Toronto CNETs conference in 09. Steve and I both were leaning toward PRRT as the best chance for zapping carcinoid tumors. His case was more serious than mine - more tumors in the liver. He was quite ill during most of the conference. The three of us shared a cab to the airport. Soon as he got back home to Ohio, Steve headed for Bad Berka.

He was completely honest about the nausea, the nearly paralytic fear upon hearing the words, "start the Lutetium," and the trust he had in Dr. Richard Baum. Steve was certain he could beat carcinoid if Baum administered a dose of radiation now and then to stun or kill his neuroendocrine tumors. And I think Steve did buy some time.

Steve was a complex case. He had a little scrap of kidney left, which made administering the kidney protective substance - amino acids in a thick liquid, Geofulsin - more difficult than for the average patient with two working kidneys.

He was complex in other ways too and I think, often misunderstood. He provided a great service to the NETs community by blogging about whatever treatment he happened to be on - and there were several.

He loved to talk on the phone and an hour's conversation was not unusual for him. As time went on, many of Steve's political views veered in the opposite direction of mine and eventually, we just stopped communicating.

But I never forgot him. Never will. He'd probably deride this sentimental send-off so I'll just say, "Steve, you crazy SOB, how dare you leave and not tell me!"

Ghana casket shaped like a papaya. Design Museum Weil am Rhein.

Obamacare - Hate or Love it

2012-01-23T19:54:00.000-08:00

Health Insurance is Changing Because of Obamacare
I've given up on trying to call the health reform enacted during the Obama administration anything but "Obamacare." History may give a different twist to this somewhat misleading moniker. But for now, everyone who encounters any kind of hardship in the field of health care is blaming Obama. He's an easy target. Everyone forgets the opposition he had and the way his intended policy got bent out of shape.

Today, I learned my health insurance provider, Aetna, is "re-branding" with a new logo and snazzy new features aimed at helping me make medical decisions from my smart phone. At least one of these aps, sounds pretty cool. Now I can compare the cost of seeing one health care provider versus another. It's location specific, and I still have to log into AetnaNavigator, the membership online service so clunky it should be called "Aetna Aggravator."

Comparing hospital costs has been a feature of the Medicare site for years but are we to make our decisions based solely on cost? Apparently.

Hate Obamacare?
Well, do you want to return to yesteryear when folks with "pre-existing conditions" couldn't get insurance if they changed insurance carriers or were out of work? Not me. I have a big pre-existing condition called neuroendocrine cancer. Did I hope Obama would push more reforms through the political pipeline? Oh, yes.

I also hoped we would get community clinics that every for-profit hospital and clinic would be required to support and that both wars would be immediately curtailed and our tax money put to better use. I hoped Planned Parenthood would not be de-funded. I hoped for a lot of things but what I got was ending the "pre-existing conditions" clause and that, my friends, is not insignificant.

No charge BC
Today, the White House announced health insurance providers will henceforth be required to provide 100% coverage for contraceptive pills and devices to female policy holders. It's been a while since I needed birth control but hey - I'm happy for my (insured) fertile sisters.

Here's what's hinky.
Health insurance companies are going to make it easier for us to choose cheaper options. Why don't they just pay more for the services of providers like doctors, hospitals, radiology techs, etc? They've been cutting what they pay doctors, etc. so providers are socking us with those miserable "co-pays," which means we have to make up the difference even though we have insurance (paid for by us and our employers at ever-increasing rates.)

The most profitable company in the US in 2010 was United Health Care. So, don't tell me the health insurance folks are going broke. Aetna, my provider paid CEO Mr. Williams, $72 million in total compensation when he retired last year. That's on top of millions he already earned every year during the five years he was in the top slot.

To get a salary like that, you gotta keep the board of directors happy.
That means they all earn big bucks, too. How did they get that dough? Because everyone who works at Aetna's mid and lower levels has seen a cut in pay or some kind of drop in compensation over the past two years AND the amounts paid to providers has been reduced. You pay less, pocket more.

I haven't tried to find the annual report but even if I did, it would be hard to tell how much the average person at the top of the Aetna heap rakes in. That's what annual reports do. They "report" in such unclear terms that it takes an expert to get at the truth. They wouldn't report at all if the feds didn't make them do it.

Enough greed to go around
Here's what's happening while we dink around on our smart phones trying to find a cheaper way to get scanned and treated: the price of every tablet, every chair in the docs' waiting rooms, every drop of saline in every IV drip, is soaring out of sight. It has nothing to do with Obamacare. That's just the way it is in a profit-driven system. You can charge whatever the market will bear.

I don't know about you but I can't really bear any more. Maybe if I could get 1/72nd of Mr. Williams' "golden parachute..."

Is it fatigue or am I just tired?

2012-01-21T18:57:00.000-08:00

Home Again...

It was 10 days getting back to "normal" from the China trip. Fatigue has been my worst enemy for many years, now. Being tired all the time means I have no zest to start or complete projects. I just have no energy. Especially in the heat of summer.

I've tried ginseng (made me dizzy,) other oriental herbs (a bit of help sometimes,) acupuncture (helps more,) anti-depressants (help a bit,) exercise (helps a bit,) yoga (helps more) and stimulants like caffeine (keeps me from sleeping, makes me irritable,) vitamin-B-12 (helps a bit.) Now and then, I have a glorious day that reminds all the other days are more or less blah.

You might think a lot of bits add up to "normal," but apparently, things don't work that way.
If I get completely exhausted - almost anyone on a 20-hour flight will - it takes days to be anything like normal. I've fought fatigue a couple of decades. A cancer patient at 67 probably can't expect to feel like Super Woman. Still, I can't accept my condition. I want to DO something about it.

But I learned something on this trip. So long as I get enough sleep (8 hours is fine) and I am excited about what I'm doing - I can keep going indefinitely. But when I stop, it all catches up to me and I am exhausted for days, weeks. I don't know that the ratio is but a good estimate is at least one day of exhaustion for every day of pushing myself. So, I was on the China trip 10 days. Took 10 days to get rested enough so I didn't have to sleep 12 hours at a time.

To make things worse, I have insomnia.
So I have to knock myself out with some combination of pills to get to sleep and stay asleep for any time at all. If I do drop off without medication, I sleep two hours - tops. Then I am awake or semi-awake until I take a drug. And the combination has to change all the time because after a couple or three nights of the same combo - it quits working at all.

I've tried just staying up all night and that doesn't work, either. I drift into a semi-sleep that truly is awful. I'm so groggy when I get up that I don't get up. I stay down. Anything is better than that. Hence the meds.

I asked Dr. Woltering why 'noids are so fatigued and he said, "I wish I knew!"
I wonder now how much chronic fatigue actually is undiagnosed NETs. My symptoms got a lot worse after an attack of Epstein-Barr. My oncologist recently prescribed something called Nuvigil. It costs $50 co-pay. I decided to find a cheaper way. Ritalin is supposed to do the same thing but it is not as smooth. Ritalin I can get for about $5 per 30-day supply.

Anybody had experience with these meds? Got a solution for carcinoid-related fatigue? Let me hear from you. Toddling off to bed, now. Tonight's combo is Ativan and Lunesta. Just one or the other alone no longer works.

Big Pharma Exporting More US Jobs

2012-01-18T18:49:00.000-08:00

Who's moving the most US jobs overseas?

Apparently, Big Pharma doesn't care if it looks like Big BAD Pharma. A tidal wave of American jobs is landing on Asian shores at a time when the US is suffering the worst recession in 70-odd years.

In the past few months, some of the largest pharmaceuticals announced deep job cuts in the US and Europe. In the same breath, they disclosed plans to beef up their plants in Asia - mostly China.

Makers of the famous "Purple Pill," Nexium, doubled down on the pink slips, according to Reuters News Service. AstraZeneca, based in the UK, will cut its U.S. sales operation by 1,150 jobs, including reps and managers. That's nearly a quarter of their sales force. Just four months ago, AZ cut 400 U.S. jobs and said they expected to cut a few more.

Today, AZ announced a deal to buy Guangdong BeiKang Pharmaceutical, the Chinese generics maker. It's the second AZ acquisition of a generics company, although AZ has partnered with some other emerging markets firms.

Big Pharma Heads East

AZ is the world's second-biggest foreign pharma, according to Reuters. Despite a slowdown in the Chinese market this year, AZ plans to put $200 million into a manufacturing facility near Shanghai .

Pfizer is the world's "largest research-based pharmaceutical," according to the Pfizer website. They make the anti-depressant Zoloft, and Sutent, which went on the market at the same time as Novartis' Afinitor. Both drugs are approved for neuroendocrine cancer.

Last year, Pfizer announced 16,300 jobs would be cut and that it's UK plant in Sandwich would close. Pfizer's cutbacks ostensibly bankrolled its expansion in Shanghai.

Eli Lilly did the same thing in 2009, cutting 5,500 jobs in U.S. and other branches as it doubled its sales force in China.

Novartis followed suit last month, announcing 2,000 jobs would be cut, including more than 1,000 in Switzerland while adding 700 jobs in China, India and other low-wage countries. Novartis makes Sandostatin, the man-made version of somatostatin, used to diminish the symptoms of neuroendocrine cancer.

Who's Got the Biggest Market?

It's no secret China is poised to unseat the US as the world's largest consumer market. Just as many of the patents on popular drugs are about to expire. The obvious move would be to the emerging Asian markets where labor is cheap and the demand for drugs is zooming. But shipping jobs overseas comes at a cost.

The Novartis cuts kicked off heated protests in Basel, the European head quarters, where hundreds of NETs patients go for Peptide Receptor Therapy, developed by Sandoz before it was taken over by Novartis. Someone torched the Swiss hunting lodge belonging to the Novartis CEO and the normally peaceful streets of Basel were full of angry demonstrators.

The Largest Transfer of Wealth

"If you can't afford your medication, AstraZeneca may be able to help," coos the soothing voice in AZ's TV ads. AZ's website claims in 2010, they helped 545,927 people with 4.1 million prescriptions for a savings of $947 million.

So - does this balance out? They cut prices for some folks and put others out of work - which means they can't afford their medications, either. That's far from reassuring, to me.

The staggering amount of investment in Asian pharmaceuticals represents one of the largest transfers of wealth and employment the world has ever seen. Consider the Novo-Nordisk $400 million plant or Sanofi-Aventis' $126 million operation, both in Asia.

Risky Business

Big Pharma kicked the US job market while it was down. It's still down, maybe up on one elbow. But there's considerable risk involved for the giants who opted for cheap labor to pump up their already respectable profits.

Right after many of the plants opened in China, their government announced it would now pay less for drugs, slashing prices by 21 to 40 percent. It's reasonable, from the Chinese government perspective. Medicine doesn't have to be shipped in, it's made in the back yard by their own people.

Then, Greece and Germany decided to give themselves a big discount, too. The entire world is grappling with the out-of-sight cost of drugs these days. In countries where people come first and corporate profits second, governments strictly control the cost of medical care.

Is Anyone in Charge?

Just whisper about government control in the US and you'll be branded a "socialist" or worse, a "communist." These terms are outdated as the Cold War. Just as Asia is opening to capitalism, we adopted many socialistic programs years ago - not based on ideology but because it's the right thing to do. (Take care of elders and children, especially if they're sick, etc.)

The movement to shrink government is misguided. We need more governmental controls where it counts - in the realm of providing health care, for example. We need far less government where things get personal - whether I marry somebody of the same sex or who decides when life begins.

What Would China Do?

None of these things will matter if China suddenly decides to take the reins of a runaway economy. The reason Asia has cheap labor is because people don't have choices. Not really. Yes, they can choose to live like peasants but most prefer a climate-controlled dwelling, flat-screen TV, cell phone and their own car. But if you live where the state needs people to work in a factory - guess what? You're going to work there. Or else it's back to the rice paddies and possible starvation.

Shock waves went around the world last year when a dozen workers at an Asian Nike plant committed suicide and at least several hundred workers in Indonesia, Taiwan and Hong Kong threatened to kill themselves if conditions didn't improve. An investigation by an international labor group found scores of factories violated child labor laws and the 60-hour work week. Say what? SIXTY hours?

Goal Number One

Recently, China enacted some labor laws aimed at better standards. For the first time, there will be something akin to social security so workers can look forward to life beyond their productive years. With her long history of social turmoil and revolution, China knows a busy population is a happy population. When people are happy, they don't want to overturn the government. When the government is stable, everyone wants to do business.

But that also requires the government to be omnipresent, improving matters when possible and squelching dissent when necessary. The Chinese government has a presence in every US factory on Chinese soil. When the chips are down, China will decide who gets the jobs and how much profit is made. Goal number one is keeping the people productive.

Every Boom has a Bust

Sometimes the boom lasts a long time. Sometimes it's over like Disco. What happens when things in Asia start looking like the US today: lots of unemployed, unhappy people, corporate exploitation and incompetent, indifferent leaders? No doubt China, keeping goal number one in mind, will kick the foreigners aside and run the factories as they see fit.

That may not coinside with America's number one goal: make money

I was joking but only half-way, when I told a friend we may soon be assembling cell phones and sewing tennis shoes, with three or four Chinese families as roommates. It might not be so bad. Maybe then we can afford the cost of our health care.

For a good explanation of how prescription drugs are marketed, go to "Follow the Pill" at http://www.kff.org/rxdrugs

2012-01-15T21:38:00.000-08:00

What will you do? Pay for drugs or just let go?
This should never happen in a country that claims to be the best in the world. But it is happening, especially to people on Medicare, people with cancer, people with little time left.

They face buying hope in the form of medication or betting their ailments will somehow allow them more time on Earth. If you doubt the truth of this example, ask anyone with cancer how they afford the drugs they must take.

I recently read the anguished words of a woman trying to decide whether to end her retirement so she can work and pay every dime she earns for her husband's medication - or skip the drug and stay home for what may be the last of his days. They're on Medicare and have insurance - but the drug he needs is wildly expensive and it's not covered by either Medicare or the insurance company.

His previous drug regimen wrecked his kidney. The new prescription may not be any better. But it could do him some good - if he can come up with $48,720 a year for a drug made by Pfizer.

Many of the newer cancer drugs cost upwards of $100,000 per year.
Even the starting cost for the relatively low-priced carcinoid maintenance drug, octreotide acetate, exceeds $2,000 per year for people with insurance. A reclassification effort may place octreotide out of reach for most Medicare patients if the plan goes through this year.

The U.S. pays more for prescription drugs than any developed country in the world.
And Big Pharma reaps high profits. Consider these figures from Reuters News Service: Pfizer, one the country's largest pharmaceutical companies netted $3.74 billion in the third quarter of 2011. Johnson and Johnson, makers of everything from Tylenol to anti-psychotic injectables, raked in $3.48 billion in the first quarter. By the end of the year, they'd made $4.53 billion. Novartis, maker of Sandostatin, the brand name of octreotide, netted $2.49 billion in the third quarter.

Why do drugs cost so much?
Developing them costs, sure. The FDA puts every new drug through rigorous testing. And the FDA shares in the profits each company makes. In fact, the marketability of a drug is one of the FDA's concerns when it approves a drug. Seem like a conflict of interest to you, too?

But the bulk of Big Pharma's budget goes to promotion.
According to the Center for Public Integrity, only 17% of the average drugmaker's budget is spent on development. An obscene amount goes into lobbying. From 1998 to 2006, pharmaceuticals spent $855 million to convince elected officials they need no price controls. There's legislation floating around Washington now to require pharmaceuticals to cut lobbying budgets and help out folks who can't afford their products. Any bets on how that's going to go down?

Where the money goes
The next time you see one of those sunny commercials on TV telling you to "ask your doctor about" some drug or other; when you flip through a magazine and see those full-page ads for certain medications; when you see those stylishly dressed drug reps wheeling their cases of drugs in to your doctors' offices - that's where the money is going.

None of these people look like they are sick at all. They don't even look like they've ever known anybody who is sick. I wonder what they will do when the time comes for them to choose - sacrifice all for a drug that MIGHT work - or just let go.

>

2012-01-12T20:52:00.000-08:00

Good Times in China 2012
Perhaps I've been too negative in recalling our China trip. Let me be clear: China is an amazing country. It makes up 19% of our world and with 1.2 billion citizens, China is the most populous nation on the planet. Transitioning from a feudal society to a global economic power hasn't been easy but it has been swift.

Through a series of five-year plans, China has been bootstrapping her country into the 21st century since the late 1940s. Our hotels were first-rate; at least equal to American lodging. The Radisson Blu in Shaghai is superior to the average five-star US hotel.

US and international companies abound. American brands are everywhere. Even in the 7-11. Yes, there are "real" 7-11 stores filled with soda, candy, chips, soap, etc. Just like home.

How did China change seemingly overnight?
As a schoolgirl, I learned China was a "communist" country - there was no more dreaded American word in the 1950s. We denounced "Red China" and feared they would invade our shores. Now, we welcome Chinese visitors and many have become US citizens. But most of us still don't have a clue what China wants or plans.

One Child
Our tour guides were extremely patient and open. They never declined to answer a question. I asked how the "One Child" policy is enforced. Apparently, both incentive and penalty are dispensed.

Every baby is registered with the government, just as in the US. A short time after the birth, a government social worker comes to the home and explains birth control options. Whatever method is chosen is provided free of charge. Primary education is free. Health care is free.

If the mother becomes pregnant again, she may opt to have a second child BUT education for this child will not be free. If the mother is employed by the government, she instantly loses her job AND the family must pay the equivalent of several thousand US dollars to cover the government's cost of providing for this second child.

There are exceptions. Some ethnic minorities, such as the nomadic Mongolians, are exempted from the One Child policy. If you are an only child and you marry an only child, you may opt for a second baby. There are a few other exceptions for farmers and families whose children don't live to adulthood.

The grand scale.
In China, there are no small plans. Everything - from the ultra-modern architecture of downtown Shanghai to Beijing's endless forests of high-rise apartments - is in your face. Twenty new universities will be constructed within a few short years. Many will open within the year. Sending students abroad could become a thing of the past. Already, China has committed to building apartments to house three million people. That's the entire population of France!

Fleeting sights and impressions.
As our tour bus careened through the narrow streets of a tiny village outside Beijing, I saw women sitting in the winter sun, Each one was working on embroidery with silk thread, Each woman had a different style but the themes were pretty much the same - brilliant red blossoms on a leafless branch; a yellow kitten that turned into a gray and white kitten when you flipped the picture from back to front.

I saw some masterful work at the silk museum. There were a few individual designs that didn't look like any of the other pieces. I was especially taken with a large, framed embroidered abstract painting with what appeared to be brush strokes and texture. From a couple of feet away, it looked like a heavy impasto with brilliant colors and drips of paint. Close up, it was a shimmer of silk thread embroidered with tiny, carefully chosen stitches.

What are we doing?
While nearly every Chinese child strives to be the best student in his or her class, a disheartening number of our kids are dropping out of school. We have what they want yet we throw it away.

The secret rooms.
In both Beijing and Shanghai, multi-story buildings are crammed with tiny rooms of fake watches, souvenirs and stuff a tourist might buy. In some of these rooms, no bigger than a closet, ladies handbags looked pretty close to real Vuitons, Coach or Channel. But isay you want "real leather." Suddenly a mirrored wall opens to another room - sometimes a warren of other rooms - where the high-end imitation purses go for about half as much as the real ones.

This price involves haggling and anyone who doesn't like to bargain makes the sales person very happy. So happy, he or she will continue trying to sell you stuff until you want to run away shouting, "No! I won't buy anymore stuff!"

We were warned.
Pickpockets and men who try to lure other guys into dark alleys to meet non-existent girls may be a problem at night in some city places but none of us were ripped off. Occasionally, someone approached a member of our group asking to have a cup of tea so they could practice their English.

One of our tall African-American students was mistaken for a famous athlete. Someone asked for his autograph. We all laughed. He was digging the attention.

We met friends of friends.
Before we left Texas, we emailed several people (mostly Chinese but one American) to make new friends. From them, we learned that life in China is pretty much like life everywhere else. An American teacher enjoyed a salad in the hotel restaurant. He never thought he would tire of Chinese food but after five years, the inevitable happened.

A woman executive for an international company wanted to spend more time with her young daughter but she feared losing her position now would mean losing opportunities later. Another woman, also highly placed, postponed marriage and now doubted she would ever have a family.

My favorite memory was of Beijing, in a maze of ancient one-story houses that had been saved from demolition. We met a real Kung-Fu master who had coached some hollywood stars. HIs home was cozy and humble but he was clearly delighted we were there. We asked him to perform a move.

In a split second, he tapped his temple, flicked his thigh as though pulling a knife, clapped his hands and pointed his finger like a gun while stomping one foot. That's not an adequate description. You had to be there.

Travel with and without medication

2012-01-11T17:07:00.000-08:00

This could be your T-shirt!

Traveling With and Without Medication

I didn't want to travel with the pump and all that requires. Most times, it's not a huge problem. But trying to explain to Chinese security folks why I had an electronic device with a tube attached it just didn't seem wise. So I decided IXNAY on the UMPAY for the nine or ten day trip.

Skip this if you already know about octreotide
A long-acting octreotide formula developed by Novartis, called Sandostatin LAR, is widely used in the US. Prior to LAR, patients had to inject themselves with octreotide acetate several times a day because in this form, the drug does not stay in the body for very long.

Some brilliant person suggested using the same kind of pump that provides man-made insulin for diabetics. It's called the continuous infusion pump and for some folks with carcinoid (like me) it is the best way to get the benefits of this drug.

The pump delivers a constant small amount of octreotide under the belly skin, just like a diabetic gets insulin. It requires drawing the drug into small cartridges and putting them into the pump. Octreotide acetate can remain useable at room temperature for a week or more but once it is opened, it's best to keep it refrigerated. Storing it long-term also requires refrigeration. Self injection requires syringes and needles. Even if you have the pump, you sometimes need a syringe, alcohol prep wipes, an infusion set (the tiny tube that painlessly goes under your belly skin) and extra batteries for the pump.

BRP and Fatigue
I only had flushing in the weeks leading up to NanoKnife ablation of two liver tumors. I've never had wheezing. My main and most troublesome symptom of neuroendocrine disease is fatigue. The second most worrisome problem is frequent, watery diarrhea.

Recently, I began using black raspberry powder (BRP) to stop the pale, loose stools caused by octreotide. In many cases, although octreotide helps diminish the watery diarrhea associated with carcinoid, the drug also causes some bowel problems of its own, primarily gas and voluminous bowel movements.

I found the BRP to be exceptionally helpful in stopping diarrhea and my stools have been a one-per day, normal-in-every-way experience for months. I believe BRP also helped provide a bit of energy but since I was also on the pump, there was no way for me to know whether BRP or octreotide - or the combination - was making me feel better.

I decided to make the China trip an experiment. I packed BRP, a dried product in a baggie, and an emergency vial of octreotide in a box, along with some syringes and prep wipes. I learned to prepare the BRP using a small strainer and a funnel, so I theorized that might be more important than the continuous infusion of octreotide.

What happened with BRP
I quickly learned that (for me) stopping the pump and continuing the BRP while sitting long hours on a plane caused me to be constipated - a condition I hadn't experienced in years. I began mixing my BRP with Metamucil in easy-to-use packets.

I kept up with the BRP for a few days after arriving in Beijing but I couldn't take it in liquid form through China's airport security (same as ours.) Trying to get around on a bus with a purse and two bottles of stuff that will stain anything it touches a shade of purple, also seemed unwise.

The good news is: I didn't have diarrhea.
Even when I stopped taking the BRP, my stools were normal. That's great for many reasons but anyone who's traveled in Asia knows the agony of going to a public toilet, which turns out to be a porcelain-rimmed hole in the ground. To use it without splashing your legs and feet, you have no choice but to squat down as deep as your knees will allow. You don't want to do this more than once a day, believe me. I'm 67 and fairly limber but not strong enough to rise from that posture without a struggle.

I should have done some muscle building before we left. Having to put my hand down and "push off" the floor to get standing again is something I hope to never repeat. Washing up in icy cold water (China's hand driers do not provide any heat - just a fan in most cases) and applying a whole bottle of hand sanitizer did not make my hand feel truly clean and I worried until I got somewhere with hot water and soap.

Back Home Again
Even without a four-hour layover in Chicago, without the subsequent loss of our luggage, and without the four-hour flight from Chicago to Houston - it would have been a grueling trip. Add to that about 20 hours from China to Chicago, standing in line for passport control, etc. A 20 year-old olympic swimmer would have been a bit weary. I was wiped out. Still am.

Getting Back to Normal
I resumed BRP yesterday and will start the pump again tonight (Jan. 11.) Why? Because I was fatigued; understandable for someone of my age and condition. But I can feel the fatigue getting worse, not better.

Anyone else in Carcinoidland with fatigue as their major symptom? Have you found a solution? I once asked Dr. Woltering what it is, exactly, that makes us so fatigued? "I wish I knew," he replied, "I could win the Nobel prize for medicine."

A FREE "ObaMau" t-shirt to anyone with a good solution to carcinoid-related fatigue. (China loves Obama, whom they consider more socialistic than previous presidents, The T-shirt has a likeness of Obama with the hat and collar of a "Red" army general. Below him, chinese characters declare, "power to the people." Or something like that. I don't have a clue how this shirt will go over in the US. Maybe for. Maybe against. Yours if you have a good, workable way to prevent the fatigue most carcinoid patients have to some degree or other.Your solution will be tried by me and if it works, I will cover shipping as well.

China 2012

2012-01-10T21:48:00.000-08:00

China 2012

The best thing about my 10-day trip to China? I didn't think about carcinoid!

Chinese family at Great Wall, by Gale Wiley

The 24^th of January launches the year of the Dragon.According to Chinese tradition, it’s an auspicious (meaning important) year forworld events including the forces of nature.

Since returning from a nine-dayvisit to Beijing and Shanghai, I’m certain China will be a major part of whateverhappens to the world in 2012.

Why?

Because, China is growing faster and more impressiveevery second. If you’ve never traveled in Asia before, the scope of populationdensity will take your breath away. I’d like to see folks who favor unbridledgrowth spend some time in China. It will certainly explain why the “one child”policy in China should be a worldwide effort.

Lucy at the Forbidden City Brrr!

Quick impressions

Everyone works long hours. Old, young, in offices or fields,a 12-hour day is nothing unusual.

We were there during the advent of thenation’s biggest celebration: the lunar new year, which often gets combinedwith Christmas and the Western New Year.

Some places displayed Christmas decorations but there wereno nativity scenes or anything remotely associated with the religious historyof our holidays. We saw a few churches but they appeared to be empty or usedfor other activities. In Beijing, a large plaza in front of what appeared to bean abandoned cathedral, was the scene of scores of people dancing in unisonwithout touching – sort of a giant Jazzercise session. We didn’t see anyonedoing Tai Chi or Qi Gong. We were told the older folks still practice theseancient exercises at 5 a.m. but we weren’t up early.

Ten years ago, the streets were full of bicycles

Now cars andMopeds park on sidewalks and every possible spot. Drivers are aggressive anddangerous. Traffic rules are mostly ignored. I was nearly clipped a couple oftimes and saw at least one person seriously injured in the streets.

VW, Mercedes, Toyota, Nissan, Ford – symbolize a level of prosperityChina has never seen before. Prior to the People’s Revolution, there were a fewwealthy people at the top and vast numbers of peasants who lived and died likeslaves. There was no opportunity to become educated, to develop skills, toachieve even lower middle class status.

Now, basic education is mostly free of charge. Top students advanceto upper grades or may even be sent abroad to experience what the West offers:creativity; conspicuous consumption; freedom to do pretty much as you like. Inthe 80s, most Chinese scholars sent to the US ended up becoming citizens andstaying here. Now, more are returning to China with expectations of good-payingjobs and a lifestyle their parents could only dream about.

Like a mother hen with too many chicks, the Chinesegovernment keeps trying to appease its enormous population. They know have-notseventually organize and overthrow their rulers. So keeping folks fed andrelatively happy is in the State’s best interest. The second part – squelchingorganization – is not so easy. But they try. The religious movement known as FalunGong, was persecuted pretty much outof existence; leaders jailed; followers “re-educated.”

My husband, Gale Wiley, shooting footage in a Buddhist Temple

The government cares less about religion.

Buddhist templesabound and nobody is hassled for burning incense and chanting. But the idea offolks organizing and establishing any kind of dissent is their worst nightmare.After all, that’s how the current regime was born.

The limits of the Chinese government were tested and clearlyshown in Tiananmen Square, now on the must-see list of Beijing’s tourism sights. Official accounts of the brutally-suppressed uprising blame “outside influences”for the carnage.

Now, the perceived threat is the Internet, especially Facebookand Google.

China knows the devastation of social upheaval and they wantno part of it. They created their own form of Google called Baidu (Bye-Doo)with their own equivalent of PayPal and FaceBook, both of which are watched andcensored. Baidue is totally ripped off from Google, which fought censorshipwhile the Chinese copied them down to the last byte.

Koi pond at a Buddhist temple in China

A funny thing happened in a Buddhist temple.

I got separated from the group and was searching the maze ofpathways for a familiar face. I noticed men in stylish, long black overcoats.They didn’t appear to be guides of any sort and spoke to nobody.

During the Cold War in Europe, I’d seen guys like this - keepingan eye on things. I called them “Little Brothers,” spying for “Big Brother.” Ihad a video camera and grabbed some footage where photos were allowed.

As I retraced my steps at the temple, a tall man in a blackovercoat walked toward me and caught my eye. He kept moving and said quickly,“Be very, very careful, Madam.” He made a swift gesture, lifting his eyes tothe sky while bringing his finger and thumb to his mouth, as though drinkingfrom a thimble. “Listening,” he said, taking long strides in the oppositedirection.

I briefly imagined myself caught up in a spy thriller,having just received a warning from a double agent. But mostly, I was puzzled.Like most American grannies, I’m mostly ignored.

Today, I saw a small news article about a senior Tibetanmonk who set fire to himself to protest China’s oppression in his remotehomeland in Sichuan Province. http://www.guardian.co.uk/world/2012/jan/09/china-tibetan-monks-body-paraded.He was the 15^th monk to self-immolate since March!

The news article is dated Jan. 9, the day we left China butit is possible the monk died days earlier. How many of the people praying andchanting at the Beijing temple knew of his death, I wonder. Was the place underspecial surveillance? Why was the tall man warning me? Perhaps he was trying totell me there is more to China than most tourists ever see.

Amid the colorful neon signs and the high-end knock-offdesigner purses, there is a sinister side to China. Any government that seeksto censor and suppress has a dark side.

Someone asked if I now trusted China since I have been thereand seen the people. I would say I trust that China does not want war withanyone. I trust their government’s mission to keep its people happy and I trustthe Chinese spirit, hard work and intelligence will continue to bring that vastcountry into the 21^st century.

But if you are there to do business, prepare to becopied. Some would say ripped off. That’s something China and other Asiacountries are very, very good at – making copies. Originating ideas andconcepts – not so good. But that may change and if it does – watch out.

2011-12-19T12:09:00.000-08:00

Underpaid Medicare Docs - Finally Some Action ... Maybe

Today (12/19/2011) doctors who treat Medicare patients got a two-month reprieve from cuts to their income. This is hardly salvaging the Medicare program. In fact, it is the classic "kicking the can down the road" that got us into this mess. Go to: Medpagetoday.com to read about it.

The state of American health (yep, I'm including Canada and south of the border, too) is deplorable. Why can't we have sufficient health care for all citizens - especially in the U.S. - arguably the most powerful country on the globe?

The cutbacks in Medicare and education are just a symptom of a much larger illness. Truth is - we just don't care enough to do the right thing. Powerful corporations are making sure their needs are top ranked and our lawmakers (most of them, anyhow) are going along with it.

It's not that we "must control spending" as some officials keep whining. It's not that we have too little money. We had plenty of cash to fight two very long and expensive wars, neither of which accomplished much that I can see. What is the problem, then?

We just don't care enough. We don't care that children, sick people and the elderly will continue to suffer because our priorities are misplaced. We don't care enough to enact meaningful reforms. We don't care enough to take on the broad and daunting task of re-ordering society, as FDR did when he launched ambitious social programs after the Great Recession. (Wonder what they will call these times - the Ingrate Recession?)

When Social Security was created, business fought it. They said it would be the end of business in the US. We still have business.

If you're up against more than one opponent, what's the winning strategy? Blame it all on the weakest person around. That's what's happening now to education and social programs. They don't have wealth. power or political backing. They just have needs. So what if a politician doesn't get the endorsement of a group of disappointed parents or some hopelessly ill people? So long as they can keep getting re-elected (which costs plenty of that money we are supposed to be conserving) they really don't care.

What's a few million sick folks compared to the billions in health insurance, pharmaceuticals, medical equipment and hospitals?

Lest you think I am merely unloading a rant - let me suggest some action. Every time someone says "we have to cut back, the spending is killing us," you can respond with this:

The US has plenty of money, we just aren't spending the right way. United Health Care had the nation's second-highest profits this past year - 32%!!! The world has plenty of money. Novartis, maker of Sandostatin, the major drug for carcinoid symptoms, had net revenues of $8.45 Billion - despite a last-quarter, 2% slip.

You can also tell them health care is so expensive because we allow companies like United Healthcare and Novartis to flourish by charging whatever the market will bear. It's just that they've finally reached the U.S. market's limit. Nobody can keep up with the rising costs of health care. Not individuals, not charity, not the government.

Most of Northern Europe and the United Kingdom came to the collective conclusion that health care is a right every individual deserves. Therefore, health care should not be run as a "for-profit" endeavor without some controls. They do not have a perfect system but beats the heck out of what we have. They pay less for drugs, hospital and doctor care. Whether they have a job or not - they can see a doctor and get basic care. Yes, everybody pays into a central system but everybody gets care.

Don't stay silent. Write letters to your newspaper or online forums. Tell them what cutbacks have already done for you and what they will do to you in the near future. Don't bother writing your elected officials - they won't step across rigid party lines to do anything, these days.

Speak up! Don't get bamboozled by dogma. Not everyone who is poor planned it that way or did anything to become poor. Some of us started out well-off, then lost it all for no fault of our own. Not everyone who is sick is a smoker or crackhead. Not all kids have safe, effective schools and you can't blame the kids for that - they can't even vote!

We can do better, America. We can and we must. Everyone needs some kind of health care coverage -universal, single-payer or whatever you want to call it. Price controls must be set and adhered to. Medicare needs an overhaul but it can't be scrapped. We have nothing to replace it with.

Health care is a human right. We all deserve it. We must do whatever it takes to have it now.

Feel free to copy this message and send it to anyone - everyone - you think might want to know the truth about health care in the US.

Lucy Wiley,

Wimberley, Texas

2011-12-16T13:29:00.000-08:00

Black Raspberry Powder - the Video!

Thanks to my loving and talented husband, Gale Wiley, I have a video tutorial on how to mix BRP and some additives I've found to be especially helpful in combating post-surgical, carcinoid-related diarrhea. In this five-minute video, I show the tools I use and how to add the powerful anti-oxidants, turmeric and nutmeg, for even more control over diarrhea.

Click YouTube button below for full screen.

Tools and Tips
You must use a gram scale to weigh out the BRP. That's the only way to get a consistent dose of the powder. I use the ADE gram scale that has a cup attached. I don't use it for anything else, so I never detach the cup to wash it. I just scrape out all the BRP I can, after weighing out my dose.

The scale is the only plastic container I use. I don't like plastic or metal for storing food. I recycle Snapple bottles.They are a little heavy but small enough to tuck in a purse or backpack. The caps work well for a long time. Once the BRP is mixed and in the bottle, you need to keep it cool.

NEVER cook the mixture or mix it with boiling hot water. Just mildly warm water is all you need.

You MUST remove the seeds or sludge if you have diarrhea. If you have normal bowels or tend to constipation, you can drink the seeds or sludge but it's like swallowing sand.

About Doses
The ratio Dr. Woltering suggests is one gram of BRP per kilogram of body weight. I have not seen anything in the research literature that indicates more than 50 grams per day is indicated, so I aim at 45 to 50 grams per day. It's not toxic so you can't overdose on it. If you find that you are constipated, cut back on the amount for a while and work up slowly to the advised dose. You may need 60 or 70 grams per day.

Adding Turmeric and Nutmeg
It has to be fresh. Never use the powdered version of either plant. Some folks get heartburn from these additives, so beware. Try using only the plain BRP for a week, then add half as much turmeric as before. If that doesn't give you heartburn, add half as much nutmeg as before. If you're still heartburn-free, try upping the dose slowly over several days. You may have to play around with this for a while until you get it right for you.

I am experimenting with freezing the turmeric root to see if it can be used after thawing. I tried making jelly with the sludge but ended up just drinking the liquid that was collected after dripping through the jelly bag. I think that would be one way to get a couple of additional doses from each bag of BRP.

Adding Flavoring
The taste of BRP is not sweet or sour. It's rather bland. I like to add a little grape juice or lemonade. But this is additional sugar and some folks have problems with that. Splenda and the other fake surgars work fine, so far as I know. If you have been advised to not use these substances, try drinking your BRP straight or over ice.

Sources
Learn more about the health benefits of black raspberries at http://www.livestrong.com/article/402843-how-to-use-black-raspberry-to-fight-cancer/

The best nutmeg I've ever tried can be ordered from www.penzeys.com/

I order BRP in bulk from Berri Health (888) 761-8407 www.berrihealth.com It's not cheap. I figure it costs me about $5 per day, not including the nutmeg and turmeric. But it works better than any drug I've tried and I believe it is helping me in many other ways. Stay tuned. If you order their largest package, they will contribute to Dr. Woltering's continuing research for a natural, non-toxic treatment for neuroendocrine cancer. Be sure to write "carcinoid patient" or something like that on your order.

There are other places to order BRP and nutmeg. I do not receive any kind of deal - no kickbacks, payments or discounts - from anyone for endorsing any thing or any particular doctor, hospital or treatment. In other words, I don't take nothing from nobody and nobody owns me.

Check with your medical professional before trying any of these suggestions.

draft

2011-11-20T20:20:00.001-08:00

2011-11-19T15:06:00.001-08:00

The Future of PRRT in the USA

Ebrahim Delpassand, Chairman and Medical Director, Excel Diagnostics and Nuclear Oncology Center, Houston, TX addressed attendees at the 11/11/11 Worldwide NET Cancer Awareness Day event sponsored by Caring For Carcinoid Foundation and M.D. Anderson Cancer Center in Houston.

Dr. Delpassand has worked more diligently than any person I know, to bring one of Europe's prize treatments to NETs patients in the US. At an earlier conference, before he secured FDA approval to use 177-Lutetium, he described the extremely difficult process of his application to investigate a new drug (IND) with the FDA. It sounds like a needlessly complicated and frustrating ordeal.

In January 2011, Excel Diagnostics was granted FDA-approval for a clinical trial using 177-Lu to treat neuroendocrine tumors. At the Caring For Carcinoid Conference in Houston, Delpassand said the concept for PRRT began with a 65 year-old paper on radioactive iodine.

"This (radioactive iodine) is a sort of sliver bullet to kill thyroid cancer," he explained. The radioactive iodine is absorbed by the thyroid tumor but the rest of the isotope is cleared from thebody. The isotope has a long residence time, meaning it stays in the body long enough to kill the cancer."

Delpassand then outlined the basics of commonly used medical isotopes:

Alpha particles – don’t travel through the body, contain high energy.

Beta – radioactive particles decay and can travel short distance in tissue.

Gamma – have long pathway and if you have a camera outside the body, you can capture an image of the particles as they travel through the body. This is characteristic of such imaging as bone scans and some other procedures.

The most commonly used agent is the Beta particle. It's the basis of the radioactive forms of Lutetium, Yttrium and also Indium. These isotopes also contain auger electrons (Auger pronounced O-zhay) which promote the penetration of the particulate and electromagnetic radiation. The result, often called the "crossfire effect," is the value of PRRT (peptide receptor radionuclide therapy.)

Another way of envisioning the effect is putting a bomb (isotope) in a car (somatostatin) and driving it into an area (tumor) where it detonates and pieces (particulate and radioactive "rays") fly in all directions, destroying the tumor by rupturing its cells.

Delpassand compared PRRT to other available treatments.

"Chemotherapy can reach an area with a good blood supply but if there's no blood going to the tumor, you can’t get the agent into the tumor. Radio-labeled agents (PRRT) go through the tissue and can reach ischemicor hypoxic cells." (Cells with very little oxygen or blood supply.)

The advantages and problems:

We can identify patients by small-dose "test drive" with octreoscan or the 68-gallium PET/CT. Delpassand says Excel plans to offer 68-Ga imaging in the "first half of 2012."

In addressing some problems with PRRT, Delpassand said protecting bone marrow is critical. "We have to gauge the dosemitry to make sure there's no damage to the marrow. In PRRT, it sometimes takes 4 to 6weeks to know if bone marrow is damaged. We also have to protect the kidneys." Using positively-charged amino acid infusions can prevent the reabsorption of the radioactive materials into the kidney. Delpassand says he sees less than 1% of kidney damage PRRT in his practice.

If the tumor is limited to one organ and operable, surgery is the firstline of treatment, he added. "Usually, we follow with octreotide. Somatostatin inhibits growth hormone and regulates hormoneproduction." Octreotide, the manmade version of somatostatin, contains 8 amino acids, hence the "oct" for oct-reotide.

Excel has treated more than 100 patients with one of the three major isotopes (111-Indium, 177-Lutetium or 90-Yttrium) beginning in August 2005. Since 177-Lu has only been approved since January 2011, apparently most of these patients received 111-Indium.

Patient selection requires evidence of progressive disease, high uptake of the combo octreotide+ isotope, and certain bloodcharacteristics, such as adequate platelet counts.

Variety of Protocols

There are three or four major protocols for administering PRRT. In Germany, Dr. Baum administers lower doses with longer waits between treatments. In Switzerland, patients get higher doses with less time (usually six week) between treatments. The Rotterdam protocol, which Excel employs, is very similar to the Basel protocol with treatment intervals of 6 to 9 weeks.

PRRT protocol also includes "carrier" variation. Some programs use the combination of octreotide, known as DOTA-TATE. Others use different carriers such as DOTA-NOC or DOTA-TYR.

One of the most debatable aspects of PRRT is which isotope to use. To date, there have been no randomized trials comparing the isotopes. Generally very small tumors may respond to 111-Indium although this isotope has not been used much lately in Europe. Indium has a very short path length, so it is unlikely to penetrate a tumor greater than 2 cm. But because of its shorter path, it also may do less damage to the marrow or kidneys. Early citations for Indium show relatively small does, Delpassand says. "Higher doses now are used," he added.

Lutetium is generally chosen for tumors 2.5 cm to 3 cm. Yttrium is thought to be more effective for tumors over 3 cm. Delpassand says Indium is safe for any tumor under 2 cm.

How do you know whether PRRT will help you?

Delpassand pointed to the following predictors: tumor histology, the extent of disease, tumor load, the type and number of earlier therapies, your score on the Karnofsky scale (ability to do normal activities,) whether there are liver mets and/or ascites. If the F-18 FDG PET is positive, that indicates a more aggressive tumor. Whether your tumor will absorb the radioisotope depends on your level of uptake (SUV) which can be determined from octreoscan. If your tumor shows on octreoscan, it will likely be at least partially affected by PRRT.

Delpassand says Lutetium and Yttrium both provide higher numbers of complete and partial response but he sees more stable disease with Indium, which also makes lessrenal and marrow toxicity. 90-Y, the stronger radioactive material also carries more toxicity, he adds.

PRRT is a targeted radioactive therapy, Delpassand says. "When we look at the literature, we see very few adverse reactions."

Health Insurance Coverage

A major drawback to PRRT has been lack of health insurance coverage for the costs. In the US. Delpassand says Indium usually is covered. He hopes to announce an agreement for insurance coverage for 177-Lu within a year.

"In the future, we need to treat at an earlier stage." he said.

Q:What if you have a lot of liver tumors?"

"We haveseen patients with more tha 80% occupation (liver displaced by tumor) but they may still have normal liver function, bilirubin levels, etc. If the patient's liver enzymes or bilirubin levels are less than3 times normal, we can treat them."

It also may be possible to treat a patient who already had liver resection, a patient with only one lobe - it depends on whether the liver functions are normal. If these same conditions are teamed with abnormal liver functions, Delpassand says "we usually do not treat them."

Delpassand says at Excel, he works with a team ofsurgeons, interventional radiologists,oncologists, nuclear medicine specialists and people to help with reimbursement andscheduling.

The future of PRRT seems secure in Europe where they are now using combinations of the two lead isotopes, 177-Lu and 90-Y. Researchers in Poland and Australia are using tandem isotopes in NETs therapy.

For more information on Excel Diagnostics: exceldiagnostics.com

More from M.D. Anderson 11/11

2011-11-18T21:06:00.000-08:00

Surgery and Liver Transplant at MDA

The following remarks were transcribed at the Worldwide NET Cancer Awareness Day Patient Education Event sponsored by Caring For Carcinoid Foundation www.caringforcarcinoid.org

FOCUS ON MID-GUT CARCINOID SURGERY

Jason Fleming, Assoc. Prof. Surgical Oncology – This is an area of confusion from a surgeon's standpoint. Most of us realize certain sized tumors should be removed. But we still have a lot of work to do in the US because we lack standardization in this area.

SOME BASIC CONSIDERATIONS

The way we look at carcinoid surgery is the way we should look at any cancer surgery:

- Understand the biology of tumor you are removing.

- Detailed knowledge of the pertinent anatomy

- Goals of operation – what are you trying to achieve with surgery?

CASE HISTORY: A 63 year-old man had an ulcerated mass in ileocecal valve identified during routine colonosocopy. A biopsy identified a well-differentiated neuroendocrine tumor. He was taken to the operating room for a planned resection.

OPERATIVE REPORT – A large nodal primary was found with metastasis to lymph nodes and multiple liver lesions. The surgeon took the right colon, and several lymph nodes but there was also a mesenteric artery mass. Generally we're told in the US to avoid anything near the artery. So the surgeon took the primary tumor out and left the lymph nodes in. We generally see that in consult here.

According to the SEER data - of 3,500 patients,1500 of them had the small bowel removed; 221 had no lymph nodes removed – just tumor. 1100 had at least one lymph node removed. So the large majority of carcinoid surgeons are getting the primary tumor out only. They operate on the problem they are there for and nothing more.

This is general surgical practice that affects the outcome for patients in the US. The question is: Do you take out the mesentery met?

There are many factors to consider. You must determine whether it's low grade or whatever. When you see it's low grade, you may think it is the good kind. But what you see on initial biopsy is not necessarily what you see over time. The nodes may look completely different from the primary.

We know the primary tumor becomes more aggressive. NETs can fool even clinicians into thinking they are dealing with something slow.

THE GENETIC DIFFERENCES OF CARCIOID

Looking at the DNA, the more lines you see, the more genetic abnormalities there are. Comparing ileal vs other NETs, genetics show they may not even look like the same cancers.

If you look at the histology of well-differentiated tumors, most patients are going to do pretty well from histology viewpoint. A NETs patient presenting with liver mets could survive years. The patient presenting adenocarcinoma with mets is more likely to have survival of months.

There is a thought that, "Oh the patient has liver mets. He's a gonner. No need to take out." But with NETs the surgeon needs to get regional control because these NETs patients with liver mets can live years.

Lymph node mets are more likely and more dangerous than you think.

You can track lymphatic drainage. We inject dye where a tumor is and track where lymph drains to.

We find that most lymph node trails are like a series of filters. So metastasis is not random, it follows an anatomic and physiological path. So you know which lymph nodes will be likely to develop metastasis. The first echelon is adjacent to the tumor then more and more distant.

Proximal to Distal Approach

In Sweden, there was an article about dividing blood vessels to take tumors in the lining out. So you can take tumor out and actually save the bowel. That might affect the goal of your operation. Metastatic lymph nodes can can grow and obstruct these veins and get small bowel so it can't function and the patient will die. So patients who elect to have these lymph nodes taken out survive longer. Even removing lymph nodes without doing anything for the liver helps the patient do better.

If you remove more or less than eight lymph nodes, it results in improved survival. Detailed knowledge of anatomy determines whether the benefit outweighs risk and we recommend it.

Side effects of cancer surgery

Many of the problems are usually from rapid transit, Bile salts no longer are reabsorbed in the ileum. The bile salts get dumped into the colon and the colon doesn’t like that and causes diarrhea.

Also (the effects of) hormonal excretions can look like short gut syndrome. Use cholestyromine to bind bile salts. Steatorrhea (floaties) usually come from pancreatic involvement. When the pancreas is not active enough, you get rapid transit. Take pancreatic enzymes.

NETs patients rarely get pellagra, these days.

Q: Have you dealt with any cases of mid-gut that were not operable?

Lymph nodes can actually start to pull in surrounding tissue and begin to restrict blood flow to intestine. An experienced surgeon can tell if that's happening.

Q: Why do so many of our tumors not show on MRI or CT?

There's very high variability in the quality and interpretation of images in US. Techniques differ in how contrast is given. There can be subtle but important differences in that. It can mean the difference between seeing and not seeing tumor. So, I recommend re-imaging in four months.

Q:What if a patient wants a second opinion?

I encourage second opinions. Surgeons who are confident will say, “I would love for you to get a second opinion. In fact, here are some people in your area of the country who you might contact.”

Q: Can you have mets in the liver before having tumors in the lymph nodes or elsewhere?

The lymph system is a parallel system to the blood system. Tumor cells detach from the primary and travel, either through blood or lymph. Nodes are supposed to trap mets but blood travels directly to the portal vein and into liver.

FOCUS ON LIVER SURGERY

Thomas Aloia, Assist. Prof. Medical Oncology

Identified himself as a "recovering transplant surgeon."

"In some cases tumor cells travel through the blood stream. NETs is an incredibly complex disease. You have to take into account a lot of factors. You can’t always predict a tumor's biology. Some tumors have no hormone production. Others may be tiny and cause profound symptoms.

Q: If you are going to operate on liver and there is disease outside liver how to deal with that?

Depends if it is an aggressive type (of NETs) – poorly differentiated, Ki-67 positive, with early recurrence after resection is not a good candidate for surgery.

If the disease is classified moderate, these patients benefit most. Tumor growth causes injury to the liver. It may produce hormones that are debilitating.

If the classification is indolent – slow - maybe no hormones are being produced and no surgery is needed. Slow-growing cases often have good immune systems that keep growth down, so if you do transplant, you also ablate the immune system. So that's not so not good.

Liver resection

You can cut out one side of liver and allow other side to regrow in 6 week or a few months.

In surgical terminology:

R0 (R-zero)- resection – means 100% removal of tumors or cancerous tissue.

R1 – resection – 90%+ removal. It can benefit some patients – even if not all tissue gone. Symptom control is a benefit. Their mortality rate low - less than 1%. Most survive 5 years. Patient selection is important. You might not attempt a patient with bulky disease.

As of 2006 I saw 1,000 patients.50% had tumors in the small gut.

76% survive 5 years and certainly some patients did recur but they are alive with disease. We think selection of patients and the technical ability of the surgeon is an advantage.

Nuance is crucial to treatment sequencing. We have to pick what we will do and get the sequence correct. Without dialog in the treatment team, we can’t expect that to happen.

We are careful to address the symptomatic disease. We want to improve quality of life. Also the patient may be nearing increased symptoms and we may be able to intervene early.

Q: What about liver transplant for NETs?

Ki-67 level is important – lower is better. International criteria have been proposed. Those likely to be selected are:

- Patients in whom 50% of the liver is replaced by hepatic tumor, they have no outside tumor, they have confimed carcinoid histology, their primary was drained by the portal vein.

- We can do a transplant with less factors. It depends.

Minimally invasive liver surgery has been developed. We can make a two-inch incision on the belly, a camera is inserted, also light and a tool to heat, cut and seal the liver resection. We irrigate, place a clip on the large vessel through ¼ inch incision. The we move around and locate the tumor with EUS (ultrasound,) insert a plastic bag in abdomen and put the tumor specimen in the bag, then take out bag so we don’t spread tumor cells. Compared to the foot-long liver surgery, there's less pain and early return to normal activity,

Personalized medicine

More and more the multidisciplinary approach to NETs is trying to discern the unique characteristics of each patient and evaluate risk factors and advantages We want to determine the trajectory to get which treatment is best. This is best done in multi-disciplinary setting.

MDA does not do liver transplants but nearby facilities do and when appropriate, we can refer patients to them.

How to decide between RFA or Nanoknife?

It's best to involve a surgeon. Your first goal should be done for the removal of tumors. You want to have confirmation that cancer cells that the are out of the body. If you use NanoKnife or RFA and tumor is left in the body you are more likely to see recurrence after resection. But at times, when the structure of the liver doesn’t allow open surgery, you have to consider one of these other, less invasive approaches.

Liver surgery has become incredibly safe procedure procedure.

Not That Rare Anymore

2011-11-15T18:05:00.001-08:00

11/11/11 Houston Conference M.D. Anderson Cancer Center

Editor’s Note: This was my first experience with the Caring For Carcinoid Foundation and executive director, Lauren Erb. She and a group of energetic support workers handled the entire event very well. My complaints are few and perhaps prompted by the unavoidable. Much of what was said will not be news to readers of this blog. I note some information that was presented differently and some new developments to be aware of.

Dr. Delpassand, first to officially offer PRRT in the U.S., was the only speaker not directly affiliated with M.D. Anderson. All the other medical professionals were MDA employees. In many ways, this conference was a mirror image of the Dallas conference last month, which featured Dr. Tom O’Dorisio of Iowa and the Louisiana group practice known as the Kenner Team (Drs. Woltering, Boudreaux & Wang.)

NETs Not That Rare
Dr. James Yao, assoc. prof and deputy chair of G.I. Medical Oncology MDA observed:
For more than two centuries, neuroendocrine cancer was thought to be fairly rare disease. Looking at the National Institutes of Health’s large cancer registries going back to 1973 the stats most often quoted were 1 in 100,000 people per year would be diagnosed with NETs.

But the number of new cases has steadily risen. Now there are 5.25 per 100,000 new NETs cases in the U.S. That’s about 1% of all cancers diagnosed in US and the numbers are still increasing.
What’s the cause of this increase? We don’t know for sure but better detection and misdiagnosis undoubtedly contribute to the rise. Today in the U.S. there are 100,000 cases of people who’ve had NETs some time in their lives.

Editor’s Note: If you want an impressive look at the global aspects of NETs go to:
http://www.youtube.com/user/netcancerday#p/u

New Treatments Available
For many years, U.S. doctors had only one chemotherapy drug plus octreotide, approved for halting neuroendocrine tumor growth. Now two new drugs have been FDA-approved: Sutent and Afinitor.

Editor’s Note: Dr. Yao was lead investigator for the development of Afinitor. I expected more emphasis on this new drug but it was barely mentioned.)

A revealing statement on surgical protocol
Dr. Yao said, “We see small NETs. Sometimes they are very small and have not spread (metastasized) and usually there are no symptoms if (the tumors) have not spread. If there’s regional spread to the lymph nodes, it’s usually not operable.”

Editor’s Note: I took care to get his words down exactly as they were said because I believe this is an important consideration if you are planning to go to M.D. Anderson, specifically or to any carcinoid specialist. The following is my comentary on Dr. Yao's remarks.

The word “inoperable” does NOT mean the same thing to every specialist. To Dr. Yao and many of his associates at MDA, if you have distant metastases (such as to the mediastinum or mesentery) you are unlikely to get surgery because you do NOT meet their criteria for surgery, which is: no surgery unless they are relatively certain they can remove ALL your cancerous tissue.

Sorry to say, this policy or protocol is widespread throughout the U.S. Once you’ve spread, you’re good as dead – so far as the hospital or doctor is concerned.

I went to MDA in 2007, a few months after the removal of my primary (and only my primary, thanks to policies at a different hospital.) I still had a mesenteric mass and some other evidence of tumors in my abdomen, I was deemed “inoperable." Through the ACOR site, I found the Kenner team in Louisiana, and about a dozen tumors were removed from my abdomen.

I believe scientific literature supports this type of surgical clean-out called “de-bulking.” Certainly there is a large and growing population of NETs patients who are grateful for de-bulking. I’m entering my fifth year since diagnosis and no doubt had the disease for many years before I was diagnosed. I don’t believe I would have the quality of life I currently enjoy if I had not received de-bulking.

QOL – the missing approach to treatment
It is fairly well agreed among NETs specialists that the lower your tumor burden, the higher your quality of life (QOL.) It also is a shared opinion that because NETs generally are so slow-growing, removing these tumors can provide a much better QOL and probably a longer life-span for most patients. NETs are not like the rapidly growing, more widely known tumors such as adenocarcinoma or glioblastoma, which recur and prove fatal within a few months.

So, why wouldn’t a patient want to have as much tumor as possible removed from his or her body? Why wouldn’t a doctor want that for the patient?

Consider Dr. Yao’s explanation during the physician Q&A at the Houston conference. Patients were encouraged to write their questions on cards at each table. The moderator, Ms. Erb, read the questions aloud and various doctors answered.

Q: When does a patient know whether to “watch and wait” or go after treatment more aggressively?
A: Yao: “You really have to talk with your doctor; assess your overall health situation and weigh the risk to value ratio. We don’t do super-aggressive in some situations. We’re not peeling off tumor tissue from blood vessels, knowing that it will grow back. These long, 10-hour surgeries – we don’t do that many.”

Editor’s Note: There you have it. I think we all know that NETs return, although not in the point of origin, necessarily. We know that de-bulking buys us some time – usually pretty good time since our tumor burden has been reduced. Yes, it is a long and risky surgery. But do you think it should not be attempted? Rarely a cancer patient says, “No de-bulking. I’ll just allow my body to become filled with tumors and suffer the effects of rising tumor secretions until I die.”

Researchers are more interested in the bottom line - does the procedure prolong life? Even if it prolongs your days by only a few, it might be worth the risk of surgery. But as medical costs soar, the conservative approach is becoming the norm. Oral chemo drugs are becoming the treatment of choice, even though most of them are horrendously expensive.

Which statement sounds better to you? "We attempted to CURE cancer by removing it from this many patients." Or "we also attempted to promote a better QOL for cancer patients by removing what we could."

I'm sure some experts in risk management looked at the stats and decided the longer a patient is on the table, the higher the risk. They also factored in the prices they could charge for one procedure vs several procedures in the same time span.

Certainly, there are doctors who believe there's no benefit from de-bulking. I wonder, if these doctors were in our shoes, what would they choose?

Some patients at MDA do have partial removal of neuroendocrine mass - sometimes more than once. Usually, they consult surgeons in other departments at MDA. The facility is vast both in its physical presence and the extent of its offerings. I've known folks who probably could not have received their heroic treatments anywhere else.

Not every patient is a good candidate for surgery. Some are better served with alternative treatments including PRRT and MDA does refer patients for PRRT. But not every patient is a candidate for PRRT, either. Until the science of NETs treatments advances to the point where tumors can be destroyed or stopped without surgery, de-bulking remains a first or second-line treatment worth consideration.

Timeline - Medical History Tool

2011-11-09T18:36:00.000-08:00

Here's a great way to explain and keep track of your treatments over time. I've shown this to five doctors since it was created in June of this year. They LOVED it! This one is a little crowded and I'm not at all sure how I will change it in 2014. (How 'bout that optimism?)

It was created in PowerPoint and printed out to be put into my medical records. Sure beats having to tell your medical history over and over. My husband created it and put the whole shebang in a "drop box," which is a password protected site on the Internet.

You can just send an email to the specialist or doctor you are going to see and give them the password. They can download the information from the drop box and see all your information at a glance. You can also upload your scans if you have them on a disc. This was much appreciated by Dr. Sandeep Bagla, in Virginia when he was determining whether I would be a candidate for NanoKnife ablation. k on

Click on image to see large version.

The Numbers Game

2011-11-06T15:06:00.000-08:00

Why Not NETs?

Someone on a carcinoid forum asked why their local hospital had not included a clinic for NETs in a multi-million-dollar addition for cancer treatment. The local NETs support group has been meeting there for years - so why not at least try to bring some attention to the disease?

Here's my take on it:
Why hasn't this hospital brought NETs professionals into their new cancer center? Just a wild guess from someone whose husband teaches at a major university in the MBA program - not enough money in that field.

According to some estimates, there are 120,000 NETs patients in the USA right now. They are being diagnosed increasingly often, now at about 5,000 a year. Compare that to Breast Cancer (230,000 new cases a year) or even Liver/Bile-duct, some of which is undoubtedly NETs (33,000) or lung, prostate, even esophagus is more than 30,000.

SEER Data These most often-quoted stats are from SEER - an ongoing government cancer surveillance study. Neuroendocrine cancer or carcinoid is NOT EVEN A CATEGORY on most SEER reports.

So in most hospitals, carcinoid is a step-child, thrown in with gastrointestinal or endocrine cancers. In my experience, it is an uphill battle to try changing huge, established organizations. Your best bet is to find out where they DO have a NETs clinic that is well supported - Vanderbilt is one; LSU, U of Iowa, etc.

As we all know, a lot of physicians say they are NETs specialists but actually do more along the lines of research than treatment and not all clinics are equally staffed to deliver the best care for NETs patients, regardless what they may say.

US is behind in the NETs race Add to that the sad truth that Europe has had (for more than a decade) several more effective treatments than you can find in the US, not to mention the deplorable way US medical costs keep soaring - and you can understand why hospitals are reluctant to get into the NETs business.

The only way they can win even part of the game is to get ALL or most of the NETs patients in the country. Some are trying by adding or trying to add new equipment like 68-Gallium PET/CT and PRRT. Others are still specializing in surgery that most places won't do because of risk factors and lack of experience.

As a patient, I've elected to go with the folks who really want me as a patient and who have or will have the kinds of treatments I need or am likely to need.

SHOULD WE RATE NETS DOCTORS?
Do you want to see a rating service for NETs doctors? This would be similar to the ones already online for other doctors but not sponsored by anyone or endorsing anyone. It would be an anonymous forum for relating your experiences with doctors by name and location. Yes, I will edit some comments so I don't get sued but if you think this is a valuable service, let me know.

I wish I had known early in my diagnosis that certain doctors were not going to help me. Wish I'd known the first surgeon would only take out the primary tumor and not address the other lesions. Wish I'd known there were doctors who were compassionate and knew about treatments not available in the U.S.

Recently, I needed to see a dermatologist. I read all the posts I could find by people who had been to skin doctors in my area. Clearly, there were some good ones and some not-so-good ones. I think I picked a good one based on what I read. I think NETs patients deserve the same choice.

We already do this, noid to noid in private email but I think the information should be out there for all to see. For example, the doctor who keeps you waiting for three or four hours - don't you think you should have been warned? How about the doctor who doesn't actually believe in surgery for carcinoid? Don't you wish you'd known before you consulted him or her?

Newly diagnosed patients have enough to deal with besides learning the hard way who the most organized, up-to-date, compassionate, informed doctors are - or are not.

Patients' Manifesto

2011-11-03T18:38:00.000-07:00

"I get no respect..." the late comedian Rodney Dangerfield.

If you're a medical patient in the United States, chances are you get no respect. You're not the only one. Medical professionals also get no respect from their superiors, politicians, powerful insurance and government bureaucrats, other professionals on power trips, ungrateful patients and snippy office assistants.

R-E-S-P-E-C-T isn't abundant these days.
Now this is just me, but I hold doctors to a higher standard. They knew when they started down this road there would be dark days. They must have seen the stranglehold of heartless bean-counters who make all of us miserable. So, do they want patients? Or do they want to do something else for a living?

If they want me for a patient, our interaction must be based on mutual respect. A few years ago, another member of our support group helped me draft a "patients' manifesto." Our favorite doctor, Thomas Tucker, formerly of Austin TX, was relocating to Oregon and we needed someone to oversee our cases who would work in conjunction with our carcinoid specialists.

The Patients' Manifesto
(Feel free to rip me off.)

Dear Physician:

A group of patients diagnosed with neuroendocrine cancer, also known as NETs or carcinoid, seeks a doctor who:

- Is willing to learn about NETs and become informed along with us;

- Will attend at least one NETs conference per year;

- Confers with our specialists;

- Orders tests and scans according to accepted practices and recommendations;

- Will join the North American NeuroEndocrine Tumor Society (www.NANETs.net)

- Treat us with respect, realizing that we sometimes contribute to the body of NETs knowledge through our personal experiences.

If you wish to accept us into your care, you will have new patients almost immediately. We are active participants in our own care and have formed a support group, which meets in Austin and San Antonio.

I'm listing my contact information at the bottom of this letter. Please let me know if you would like more information.

Sincerely,

(your name and contact information goes here.)

How did the manifesto work?

Dr. Tucker posted our message on the inter-office email within the 200+ oncology doctors' practice. We weren't swamped with responses. We heard from two excellent oncologists who wanted to work with us. Both had experience with neuroendocrine cancer and both had pleasant, dedicated personalities.

My co-writer and I asked for and received times (at no charge) to interview these doctors and both physicians were impressive. We're still pleased with our relationships. Each of us took a different doctor. We compare notes now and then and see if there are any major differences in their approaches.

I realize not everyone is willing or able to write prospective doctors. But I don't think it hurts to send a letter summarizing your care and expectations in advance. If your words get nothing but a quick glance before doc enters the exam room, you will at least establish yourself as a serious, informed patient.

What do you do with a dud?

I've been heartsick with disappointment and filled to the brim with rage after encountering doctors who were dismissive, indifferent and downright evil. I could tell plenty of tales but I'm saving all that for my book. Suffice it to say not all doctors are going to respond well to you - regardless how you approach them.

Generally, it doesn't take long to realize you got a dud. He or she is disorganized or makes you wait for hours; your complaints are dismissed or minimized; the doctor makes calls on his cell phone while you're talking; he eats something in front of you and doesn't even offer you a bite.

It takes some backbone but if you think you are being treated badly, get up. Stand before them and say, "I don't want to work with you, " or something to that effect. Follow it up with, "Please do not charge me for this office visit." LEAVE. Don't hang around for more abuse.

You deserve respectful, professional treatment. Lance Armstrong, in his first book said it is very important to your recovery that you like and trust every member of your treatment team. Remember that YOU are the consumer. THEY are providing a service. It's as simple as that.

BRP Diary - Stopping

2011-11-02T19:32:00.000-07:00

Black Raspberry Powder - What Happens When You Stop?

I needed a pancreastatin blood test. The book, Neuroendocrine Tumors by Inter Sciences Institute in Inglewood, CA, advises some preparation for an accurate pancreastatin test.

You must refrain from consuming any food or medicine that will influence your insulin production 48 hours prior to the test and fast for 10 to 12 hours before the blood draw. So I discontinued the octreotide pump, quit eating sugar and refined carbs (to the degree possible) and of course, I had to quit drinking my daily BRP. I don't take any other medications.

The first couple of days were uneventful but I did have trouble staying hydrated. Usually, I sip along on my BRP throughout the day.

Still, I didn't have diarrhea and the fatigue was no worse than usual. But on day three, after my blood draw, I was feeling very tired. I didn't have any BRP mixed up so I waited another day to get that going again. On the fourth day, I had the Big D - just like the days before BRP. Fatigue seems a bit worse.

So what do we learn from this?
I believe BRP works for me. It may work for you. I started back on it today and so far - so good.

It will be a while longer before I determine whether BRP has any anti-tumor effects. But there's certainly something to be said for its ability to stop diarrhea.

Anyone else have experiences with BRP? Tell me and I will add them to this blog. Email me at lucywiley@verizon.net

Insurance Coverage for PRRT

2011-10-30T21:08:00.000-07:00

"I hear you had PRRT. Did insurance pay for it?"

I get a lot of questions about that. In my case, after many appeals, we were reimbursed for about a third of our costs. But ... as my friend, the late D.D. McKinney used to say, "Your milage may vary."

Since my diagnosis in 2006, I've seen the insurance pendulum swing from 100 percent coverage for costs including travel and lodging, to zero, zip, not a penny for anything related to PRRT. The majority of claims get some reimbursement but not without a fight.

Many factors in reimbursement
Everyone tells you to read your policy to see if certain things are covered. I say "don't bother." The insurance company is not going to cover anything if they can get away with not covering it. That's their goal in life - to not pay out a single penny unless they just have to.

If you do take time to read your insurance policy, you will see they don't cover anything described as "experimental" or unnecessary. What fits into that category? Just about anything. The surgery to re-sect your primary tumor? It could be called "not medically necessary" by some doctor, somewhere. His reasoning might be that you don't need it because carcinoid is slow-growing and (as you've probably heard many times) you'll live long enough to die of something else.

Believe me when I say there are buildings full of people who make a living by routinely saying "NO" to just about anything but your annual physical. They deny anything that sounds even remotely deniable.

After my primary tumor was observed via CT scan, an Octreoscan was ordered to see if I did indeed have a neuroendocrine tumor and whether there might be other tumors of that nature in my body. Sure enough, there were several and yes, I was positive for a tumor obstructing my small bowel in the ileum.

I got a statement from the insurance company saying the Octreoscan was an "experimental procedure." I was flabbergasted because I read up on the scan before I had it and learned Octreoscan has been THE optimal imaging to detect neuroendocrine tumors since 1994.

I searched on the insurance company database for policy information on Octreoscan and found their own statement that said, "Octreoscan is the definitive scan for confirming neuroendocrine mass..." I noted the policy bulletin number, the page and the paragraph. I printed this all out, sent it to the company and they paid.

Later, I learned the opinion came from a firm in another state that simply looks at claims over a certain amount of money and routinely recommends they not be paid. I guess some people take this as gospel and shell out for the scan.

There are other factors related to whether you will be reimbursed even a little money for PRRT.

Self-funded means bad boogie for you, in many cases.
So much depends on whether your insurance company is self-funded or not; an HMO or PPO; what your policy says; whether your doctor is helpful, if you've sought second or third opinions and many other behind-the-scenes factors I probably don't know anything about.

If you are in an HMO - reimbursement might be tough because these are the "ground floor" policies that usually pay the least on whatever procedure you are getting outside of a narrow network. If you have PPO, especially the one that offers "choice" in some form or other, you pay more but you have a better chance of getting coverage for treatments like PRRT.

Self-funded Insurance
The trend toward self-funded insurance for employees is mushrooming and that's very troublesome. Why? Because it means the company (or university or even hospital) is actually paying for your treatment if it goes over a certain amount.

Hardly anyone knows (or cares) whether they have a self-funded policy and even fewer people understand what that actually means. Self-funded means a company contracts with an insurance company to handle claims, make sure everything is above board, process requests for treatment (especially anything out of the mainstream) and deny procedures if these procedures don't jibe with what the policy covers. The company pays the insurance company with their portion of your monthly premium. Probably, you have to pay part of that premium, too. That also goes to the insurance company so they can run the business end of insuring your health.

As long as you don't need costly treatment, things rock along.
You fork over your co-pay to see the doctor, he treats you and submits a bill to the insurance company. In some cases, that's the end of it so far as you're concerned. More and more, these days, you get another bill from the doctor for "co-insurance" which means, "we didn't get enough money out of your insurance company so you have to come up with more dough for us."

If you DO need an expensive treatment, you're supposed to get with your doctor to "pre-certify" you for this type of care. That usually means someone working for the insurance company considers the request and says "yes, it's medically necessary," or more often, "no." You have the right to appeal this decision. If your insurance company is NOT self-funded, and your you can sue the insurance company for any damages from delaying treatment you might incur while working through the various appeals.

Usually, your doctor has to write a letter of medical necessity, which they enjoy about as much as an IRS audit. Some doctors are very good at this and some procrastinate or just are not very good at writing a letter of medical necessity.

Just because your doctor signs on the line doesn't mean you always get pre-certified for the procedure. Often you must go through an appeals process, which can take weeks or months. But usually, if you do get pre-certified in time to avoid the grave, you can get your procedure. But there are a million reasons why you won't and numero uno on the list is having a procedure in another country besides the US.

All is not lost, however.
You still may go, even without pre-certification or while you are waiting on a decision and have the procedure in another country and get some of the costs covered at out of network rates. (It stands to reason that if your insurance company does not have a contract with a foreign hospital, it would have to be out of network.)

In some cases, if you work hard enough and get a doctor or two on your side, you can get reimbursed at in-network rates if you can show that the procedure was not available anywhere in the U.S. and that it was lifesaving or life-prolonging.

Let's say you go and return home with your bill for the procedure.
You submit your claim with all the receipts and reports. Almost certainly you will be denied on the first hop. If you get denied on the second attempt, you usually get a third chance through independent review or another form of appeal. Here's where self-funded plans get tough.

Self-funded insurance means the company you work for does not fall under state laws regarding reimbursement or coverage. Instead, self-funded insurance is covered by the U.S. Department of Labor under a set of regulations called ERISA. Go to dol.gov and search on health benefits. The rules were originally drafted in the mid-70s to protect retirement and pension plans. Now, they also cover certain aspects of health insurance and give a pretty free hand to companies who become self funded.

Assuming you continue to write, footnote, provide citations and doctor's statements when you file the first two attempts for reimbursement, what your appeal may boil down to is a few people who work for your company, probably with no medical background or training whatsoever, deciding your appeal.

If they find you have a legitimate appeal, they may award the entire amount you seek but this is a long shot. More likely they will toss around a range of numbers they think you might accept or a sum they think is appropriate based on some opinion which will not be found written down anywhere. It means you are at their mercy and they may not be feeling very merciful at all.

If they stonewall you and say no reimbursement at all, you can sue.
Well, yes, under ERISA, you can get a lawyer to spend several hours looking at all of your records, going over the medical reports and the appeals you wrote, the company's policies and loads of other paperwork at several hundred smackers or even several thousand smackers per hour.

Then, they will write up a brief to be presented in court, for which lawyers charge lots more smackers. If this case is not heard and acted upon quickly, you will have to pay even more in legal bills. Then, if you're lucky - let's say very lucky - you are awarded all of the money you spent for medical treatment and the company has to reimburse you. Great.

But don't celebrate because under ERISA, you won't get a dime to cover your legal costs. In fact, the amount you are reimbursed could be less than you pay the lawyers. A pyrrhic victory - a win more costly than defeat. Not only that, but if you suffered any kind of problem from having to wait so long for a resolution, you can't recover anything related to that. You were so stressed you developed an ulcer while enduring the hassle and rang up a heft tab for Zantac? Too bad. No award for damages. No punitive damages, either - no matter what the company put you through.

You could still bring a civil action against the company or the insurer but do you really want more legal bills?

Short-circuiting the process
Things don't always go bad. You may be able to get all your medical costs covered and not have to hire a lawyer. From what I've seen, this depends on your stamina and the relationship you have with your doctor or doctors. If you have at least one physician who is willing to take the time, and has the kind of forceful personality and/or a sterling reputation AND he or she wants to go to bat for you, victory may be won in the early stages.

How early?
In the pre-certification process. I've known one person whose doctor had the clout and was willing to push every button to speak with the insurance company's chief medical officer. This woman's doctor was a respected researcher. He said, "my patient needs this and here's why..." He was convincing and she was pre-certified for five rounds of PRRT in the US. (See V's story in past PRRT blogs)

I've known a couple of other people who got their doctors to help and were refunded most or all of their costs for PRRT. The most recent person I know achieved this, is Josh Mailman of San Francisco. He frequently posts on carcinoid@listserve.acor.org You have to sign up to use the service but it is a good, unbiased source of information from patients who have had PRRT.

The new wrinkle
For nearly a year, PRRT using 177-Lutetium has been available and FDA-approved an the US. Excel Diagnostics and Nuclear Oncology Center in Houston, Tx (713) 781-6200. www.exceldiagnostics.com

However, Medicare, Medicaid and most insurance companies will not pay for the procedure because it must meet the requirements for an "investigation of a new drug" format and therefore may be considered "experimental." Some insurers may pay for diagnostic imaging and testing that must be done prior to and during the treatment. But last I heard, it is several times more expensive than PRRT in Europe.

Excel also offers 111-Indium, a form of PRRT not used much in Europe. The principal investigator at Excel is Dr. Ebrahim Delpassand. He will be among the speakers at a free educational conference for neuroendocrine patients and caregivers on Friday, November 11, 2011 beginning at 7:45 a.m. at M.D. Anderson Cancer Center, 11th floor in Houston. Register at http://cfcfhouston2011.eventbrite.com

The conference is sponsored by the Caring For Carcinoid Foundation and M.D. Anderson. There will be a panel of patients who have experienced PRRT for Q&A.

Dallas NETs Conference Oct.15/11 Part Two

2011-10-19T19:40:00.000-07:00

Hastily Transcribed Notes
Please see Dr. Woltering's comments below regarding octreotide levels.

Here are some notes from the speakers. I typed madly at a table in the corner, trying in vain to stay warm in a cold room so I might not have verbatim quotes but I got the gist of it.

Neurokinin and Pancreastatin the early warning systems

Most of us have our blood drawn and analyzed at least twice a year. Those little tubes of blood are analyzed to see whether certain substances are accumulating. Certain things in the blood usually are found when you have cancer, specifically NETs. They are called “tumor markers.” Sometimes they appear in greater amounts, sometimes they drop down to a lower level. These markers are compared to what is considered “normal.”

But sometimes folks have considerable tumor tissue and yet their markers are not out of normal range. That happens with me and at least a dozen other ‘noids I’ve talked to. Sometimes the markers trend upwards then go back down. If they keep going up, up like the cost of gasoline, you're in trouble. That means your disease is progressing and you need to consider a different kind of treatment.

Chromogranin-A is the tumor marker most often associated with NETs but there are others that may be even more revealing. For example, your Chromogranin-A level may be constant but your Pancreastatin level is rising. What does that mean?

Woltering: It means that your disease is progressing. Pancreastatin goes up about a year before we see anything on scans.

Neurokinin - Joy Ardill in Belfast, Ireland is one of the world’s leading researchers in this field. She said when your Neurokinin level goes over 50 you have 90% chance of being dead in 3 years. If you have some sort of intervention, you drop down to a 13% chance of fatality. There’s good news if your Neurokinin has never been over 50. You have a 98% liklihood of at least a two-year survival. (Note: remember noids, if we were talking about tumors like blastoma, two years wouldn't even be up for discussion.)

Octreotide - can you prove it makes a difference? O’Dorisio developed an Octreotide assay at Ohio State U. It became the basis of ISI’s assay.

(Note: What is an assay? It is the standard against which samples are compared. For example, in the Gold Rush, prospectors would go to the assay office to have their samples compared to a bit of mineral that was known to be gold in order to determine whether they had real gold or “fool’s gold.” Blood is from people of all ages, races and conditions. Markers in these samples are averaged to determine what normal might be. Your blood is compared to this average – the assay.)

The division hinges on Octreotide levels over or under 5000. At 5000, half your tumor cell receptors are saturated. You don’t want to fill all receptors. You don’t want to use too much of the drug because your body just eliminates it. Some evidence shows too much octreotide actually causes tumors to grow.

(Note: not long ago, it was generally thought a level between 10,000 and 12,000 was optimal. Apparently, this is no longer the case.(see Dr. Woltering's note below.) Not all doctors agree with this information. Some believe you should get doses of Octreotide great enough to alleviate symptoms and if you have no symptoms, you shouldn’t be on the drug at all.)

Dr. Woltering Responds:
Date: Thu, 20 Oct 2011 06:17:19 -0500
From: "Woltering, Eugene" <EWolte@LSUHSC.EDU>
Subject: Re: Part two of Dallas

One comment on the blog-- the octreoptide level of 10-12,000 is still optimal--- but for the study we asked the question would 5000 be better then less than 5000??????----- and that answer is still yes-- 30 mg of LAR ususally gives blood levels of 2500 or so in the averge size person--- 5000 is what 30 of LAR every 2 weeks most commonly produces

in comparsion 120mg of somatuline depot every 2 weeks gives you levels of about 10,000

The PROMID study showed Sandostatin LAR (Novartis’ brand name for Octreotide in a long-acting solution) is worth more than just symptom control. There was a 50% increase in PFS (progression-free survival.)

There are some critical issues related to octreotide dose and no data on what blood levels were in those who survived vs those who died during the PROMID study.

BMI (body mass index) matters. You don’t give a 110 pound person the same dose as someone weighing 200 pounds. Women get 15% higher blood levels than same sized man. Woltering warns: “Measure don’t guess” at Octreotide blood levels.

“I know there are insurance and Medicare issues related to these matters and we need to band together and fight this,” Woltering said. (Note: this blog and others have tried to muster enough clout to draw attention to the problems of Medicare cutbacks and insurance company policies that are detrimental to the health of persons with NETs. We welcome your ideas.)

Why haven’t we cured NETs?

Cells from different tumors in the same body are not always the same. The primary tumor usually is not same as your mets. It may look and act like a totally different tumor, depending on its location. Lymph node tumors are different from liver tumors, etc.

Inside each tumor there is generally good correlation. (Meaning the cells within a tumor look like each other and therefore would presumably respond to a treatment in the same way.) So you have to come up with sampling system that looks at each tumor to devise a strategy for pesonalized care.

Planning ahead is critical. You want to be more than one step ahead.

Dallas NETs Conference Oct.15/11

2011-10-17T20:06:00.000-07:00

If you don’t like comentary, scroll down to the Q&A. I can’t compress all details of this day-long event so look for future blogs on this conference.

What's an Old Lion Got to Offer 'Noids?

The Old Lions of carcinoid held their ground before a packed room in Dallas’ Doubletree hotel. Vinik of Virginia had a family emergency; Kvols, Wolin and Warner were MIA but O’Dorisio and most of the Kenner team held forth.

If you’ve been dealing with neuroendocrine cancer, you know Kenner, Louisiana is home to mild-mannered surgeon Philip Boudreaux, chemo-authority Lowell Anthony and the bombastic but brilliant Eugene Woltering. Ever-sunny Yi-Zarn Wang, Boudreaux’s OR partner, was watching over patients at Ochsner’s secondary hospital outside New Orleans. Since Ochsner was the event's major underwriter, I didn't really expect to see many of the other Lions.

Although no official announcement was made, Anthony apparently is parting ways with the Kenner team. He’s bound for Kentucky to head up the neuroendocrine cancer efforts at U of K - Lexington.

Newly diagnosed patients, caregivers and survivors got a brief history of the Kenner team when Boudreaux’s Power Point relived the chaos following hurricane Katrina. Boudreaux was a surgeon in the highly specialized realm of pediatric transplants, when the storm closed hospitals and hammered New Orleans along with his career. Virtually every hospital in the area was destroyed, damaged or overcrowded and barely functional.

The closest city of any size was Houston, where Woltering found a friendly suburban office to share and he continued to see patients. Sick people had made appointments. They required treatment for an illness unabated by the nation’s worst natural disaster in a century.

In a nutshell, Woltering and Boudreaux were brought together out of necessity and built a practice on those grounds. Katrina destroyed people, homes, most of New Orleans and a goodly chunk of the Gulf Coast but it brought together one of the most successful partnerships in US NETs treatment.

Thomas O'Dorisio One of the Original Lions

In Dallas, O’Dorisio was minus his wife, Sue O’Dorisio, a pediatric oncologist specializing in treating kids with NETs. O’Dorisio’s surgical associate James Howe also stayed home. The trio form the core of NETs treatment at University of Iowa Hospitals and Clinics. When Woltering, as a med student, first became interested in the field of peptides (a chain of amino acids that aid in digestion) he found O’Dorisio already had been there and done that. They formed a lifelong friendship that allows each to disagree – sometimes vigorously - with each other.

New Lions Coming On Board

Now there are new cubs on the NETs block - like Eric Liu at Vanderbilt, where the respected NETs researcher Kjell Oberg of Sweden recently accepted a teaching position. The new generation of NETs docs is comfortable with technology. You can email them your scans and records (can’t do this at Kenner.)

The new docs sometimes have different ideas about treating neuroendocrine tumors and they often approach treatment more as collaboration and less as “me doctor – you patient.”

Europe – still ahead of the US in the field of NETs, has been siphoning patients away for more than a decade by offering PRRT while the FDA and other forces kept US docs from using this extremely effective treatment.

What’s an Old Lion got?

Experience. A lifetime of hearing about and seeing every quirk NETs can throw at you. And NETs throws plenty of quirks.

For example: finding and removing the primary can be like looking for an honest politician. A tumor barely visible to the eye can pump out debilitating amounts of serotonin and other secretions. In the old days, doctors thought carcinoid was a slowpoke cancer that usually didn’t require surgery. Most of them finally got the message that a NETs patient could live much better and longer without the primary – be it in the gut, lung or rectum.

There are still plenty of doctors, clinics and hospitals who contend once the primary tumor is whacked away, you can ignore other tumors that might be littering the bodily landscape. Usually, these tumors do grow up to be big tumors and cause all kinds of blockages, organ damage and destruction.

This leads to what surgeons call “peek and shriek” protocol, says Boudreaux. One look and they close you up. In their opinion, there’s too much tumor to risk surgery. Boudreaux and Wang built their reputations by accepting patients deemed inoperable by other surgeons – especially cutters at the large multi-cancer clinics where risk management types often call the shots.

De-bulking surgery can take more than a dozen hours in the OR, so many of the younger docs won't spend that much time trying to get every bit of carcinoid out of your guts. But de-bulking surgery now seems to comprise most of Iowa and Louisiana’s basic business. Just finding and removing the primary tumor is a challenge beyond the ability of many surgeons.

Boudreaux says he’s operated on 407 NETs patients; found and removed the primary tumor in 400 of these cases. O’Dorisio also has become known as the go-to doc for locating the primary.

Questions and Answers

The Dallas conference, organized by Carcinoid Cancer Awareness Network (866) 850-9555, included two generous question and answer sessions. Here are some of the highlights:

Q: What causes NETs patients to have so much fatigue?

Woltering: If I knew, I could win the Nobel Prize. I know what doesn’t cause it: low Vitamin B levels or octreotide. It is not part of the carcinoid syndrome.

Boudreaux: I see it in people with minimum disease. It may be linked to Substance P.

Anthony: It’s important to monitor thyroid functions, especially Free T-3 levels, and exclude anemia. Even if you have normal TSH (thyroid stimulating hormone)-levels and normal Free T-4, you may need supplemental Synthroid or Levothyroxin might br better. Cytomel is prescribed if T-3 is low but that condition can be tricky to assess. And Cytomel must be carefully monitored.

O’Dorisio: We’ve seen 150 cases at University of Iowa reporting fatigue. We believe it may be equated with serotonin levels. Clearly it is a problem we see all the time.

(Editor's note: I've had fatigue for decades but my serotonin has never been above normal.)

O’Dorisio began his career in pursuit of a diabetes cure. Since his career now centers more on the treatment and research of neuroendocrine cancer, he describes himself as an “endo-oncologist.” Diabetes is a frequent side-effect of NETs, especially for those on the suppressant drug, octreotide.

PRRT - Will we ever see it?

It was O’Dorisio who brought up the subject of PRRT, peptide receptor radionuclide therapy (discussed in past blogs on this site.)

For at least four years, O’Dorisio and several other NETs specialists have been expecting to offer at least one of the two major isotopes (177-Lutetium) but at this time only one place in the U.S. can provide it, Excel Diagnostics in Houston, TX., who provided attendees with a large brochure on the spectrum of isotopes they offer.

More than 1,000 NETs patients a year go abroad for PRRT.

O’Dorisio is one of the first NETs specialists to refer patients for PRRT. Woltering, Liu at Vanderbilt and other doctors also support PRRT in some cases but the majority of physicians in the U.S. know little about the treatment and either discourage patients from getting it or advise it be tried as a last-ditch effort to slow the progress of NETs.

Q: Why don’t we have PRRRT widely available in the U.S.?

O’Dorisio: Basel is one of the five major centers for PRRT. In 1996, they began offering this treatment. They just released a report on their first 1,000 cases, showing that it is highly effective. We are very hopeful that this dance (of U.S. patients getting PRRT abroad) will stop and that specialists in the United States will have Lutetium, soon.

There is the study going on in Houston for Lutetium, following the Rotterdam protocol and we expect 90-Y for phase two.

Q: What is a good treatment for lung carcinoid? Should lungnoids get tested for Subtance P?

O’Dorisio: For markers, Chromogranin A still is the best marker for pulmonary NETs. Substance P is a good marker for mid-gut and all other types of carcinoid but normal levels are deceptive. Quest says the normal level is 1750; that the upper limit should be 80. ISI sets 200 as the upper limit.

More details of this conference, including more Q&A on the next blog.

New Study Shows PRRT Ups QOL

2011-10-13T13:12:00.000-07:00

PRRT Improves Quality of Life
The Caring For Carcinoid Foundation online newsletter cited a study from the Netherlands, published in the Journal of Nuclear Medicine, reporting patients feel better after PRRT. While this is not exactly news, it does point to yet another consideration for getting this treatment if you have a disease that responds to either of the isotopes 177-Lu or 90-Y.

Patients said they had less diarrhea, more energy, less pain and felt better overall. That happened to me, too. After I recovered from jet lag and anemia, I felt great for several months. After my third round of 177-Lu, I had no back pain - which is really something considering I've had lumbar and cervical pain most of my life.

So - we know the stuff works. It halts or stops neuroendocrine tumor growth - at least for a while. It causes some tumors to self-destruct - like Charlie Sheen. And now we have conclusive evidence that it makes patients feel better in various ways.

The question nobody in the U.S. seems able to answer is: WHY DON'T WE HAVE THIS TREATMENT OPTION AT A REASONABLE PRICE IN THE USA?

Excel Diagnostics in Houston offers 177-Lu at a whopping $60,000 for four rounds and insurance doesn't seem to be paying for it. You can get PRRT cheaper in Europe and a few other places in the world but again - insurance doesn't usually pay. Why isn't there some way to cut the red tape and get this treatment to the folks who need it to keep on living?

For years, the North American Neuroendocrine Tumor Society (NANET) and other respected groups of medical professionals have come out with statements like: "PRRT shows promise," and "needs more study." Meanwhile, European researchers have been pumping out reams of data showing the treatment is effective and worthwhile. How much more data is needed?

Well, all the research has to be done over again in the US. Why?

I'm not oblivious to PRRT's down side. PRRT has its dangers. Among the side effects, leukemia in later life is especially worrisome. But the same thing and worse can come from any of the chemotherapy drugs being touted by Big Pharma, all of whom are international in scope. Surgery is not sure fire, nor is it safer than PRRT.

And yes, I did not have permanent remission. My tumors did resume growth - at least some of them did. But some appear to have been permanently dispatched and others are stable, despite the passage of nearly two years. I'll take it. I may do it again.

November 11, 2011 World NETs Awareness Day
There will be a panel discussion on the topic of PRRT at M.D. Anderson in Houston during a daylong informational session for NETs patients. If you are anywhere near Houston, do yourself a favor and attend this conference.

More of the Black Raspberry Diary - Travel

2011-10-10T18:43:00.000-07:00

How to Travel with BRP and NOT turn Purple!

You will need: smallish ziplock baggies - one for each day you will be gone.
A funnel and two bottles of water, juice or soda. I like the 20 oz. but smaller is OK.

Drink BRP Every Day
It's important I think, to drink black raspberry powder dissolved in water every day. I skipped a couple of days, recently and the Big D came back. Not as bad as the pre-BRP days but I was happy to get my Purple Mojo going again.

If you must travel for several days, get your BRP as lump free as possible. I put a few chunks in a heavy weight ziplock bag, remove as much air as possible. Wrap it in a cloth or towel and pound it with a wooden mallet.

Weigh out your daily dose. One gram BRP for every kilogram of your body weight is the suggested dose and that's a good start but I will have more to say about that in a moment. Put a dose for each travel day in individual baggies. So one dose per baggie. One baggie per day. I use the sandwich or snack bags. (Be kind to the Earth.)

Put a teaspoon or two of plain white sugar in each baggie and mix it slightly with a dry spoon before you seal it. Make sure there is minimal air in the baggie before it is sealed. Those of you who are anti-sugar can add any kind of POWDERED sweetening you like. It keeps the BRP from forming clumps again inside the baggie and improves the taste - in my opinion. Roll up all your daily baggies of BRP and put them in another, larger and stronger baggie. Again - as little air as possible in the bigger baggie.

I bought a small stainless steel funnel for less than $4 at the hardware store. You can use a plastic one but if your baggage gets slammed around at the airport, plastic might have to be replaced. Make sure your funnel fits in the neck of a plastic water or soda bottle. Put the funnel in the bottle neck. Have another bottle of water or soda or juice nearby.

When you are ready to mix up your dose, first drink about half of the water or soda in one bottle so you will have plenty of room for the powder. KEEP the LID or TOP! Put paper towel or a newspaper down on the surface where you are working. Have a wet paper towel handy.

Open the baggie at the zipper corner - just a little bit but big enough for the powder to get out. Patiently squeeze the powder into the funnel and thus into the bottle from which you have consumed most of the water, juice or soda. This takes time so be careful. If some powder escapes onto your work surface, you will be glad for that newspaper and the wet paper towel. Spooning it in made more of a mess for me but you might try it.

When you have the powder out of the baggie and into the bottle, add liquid until the bottle is half full. Replace the lid or top. Shake, shake, shake. Then shake some more. Add the rest of the liquid but not all the way up to the top. Shake some more. Let it sit overnight if you can.

The next day, don't shake the bottle at all. Most of the dregs will be at the bottom and you want them to stay there. Sip your drink without stirring up the dregs if at all possible. You can let the bottle sit for a few minutes between sips to let the dregs fall back to the bottom of the bottle.

When you get close to the bottom of the bottle, you can add a bit more juice and let that set then drink it off. Just rinse out the bottle and let the dregs go down the drain. Now you have a bottle for the next dose. Yup. It's kind of a drag but it is the best way to keep the diarrhea away. Not a drug - not something that will lock up your innards like a "bi-partisan" bill in the Senate.

Adjusting Your Dose
My Disclaimer: I am not a medical researcher or professional. This is just what I am doing and you need not try it if you and/or your doctor think it will harm you. My sole reason for taking it is to control diarrhea. To promote anti-tumor effects, larger doses MAY be warranted.

I noticed while reading about Dr. Gary Stoner's research, that he didn't exceed a dose of 40 grams per day for his subjects. Yet he got impressive results.

If you've purchased BRP, you know it ain't cheap. So you want to take as much as you need but not more than you need. I experimented with my dose, cutting back to 20 grams a day. That did not work as well as I wanted so I added 10 grams a day. I did this in three or four-day increments. So, I took 20 grams for three or four days; then 30 grams three or four days. You get the picture. You need to take a few days to let your body adjust to each dose and if you eat jalapeno peppers or baked brie at a cocktail party, you might give it an extra day just to be fair.

At some point, you should arrive at your optimal dose. That will be when you have normal stools. Normal in color, consistency and once or twice a day. For me, that happened at 30 grams per day, as opposed to twice that if I followed the 1G per KG of body weight rule. You may require more just to keep the diarrhea in check.

I've been adding a couple of teaspoons of thawed frozen grape juice straight from the little container (not mixed as directed) to my daily dose of BRP to sweeten it and to add a little more of the anthocyanins that are supposed to be the magic of this concoction.

Freezing My Dregs
There's still lots of anthocyanin in the residue after you strain your BRP. But consuming it is a problem unless you suffer from constipation (not the typical 'noid's problem) and enjoy gagging the stuff down.

I have about three quarts of dregs from the BRP I've been taking. I reuse those plastic baggies from trips that have a little powder left in them. I keep adding the dregs until each sandwich ziplock baggie is full. Now I have enough to experiment with. Remember, the stuff has the consistency of coarse sand. So spreading it on toast is not an option for me. But what to do with it? Your suggestions will be tried and evaluated so let me hear from you.

Counting Calories?
Remember - you are consuming the equivalent of several boxes of fresh raspberries every day. I don't know how a diabetic would work this out because I don't know if an official calorie count exists. But this is an additional load of calories in your diet even if you don't add sugar or juice. If you NEED to add weight, this might be ideal. On the other hand, if you want to get leaner, better step up the exercise and cut back on your carbs.

I continue to gain weight - which happens to a lot of folks on octreotide. But at least I have normal poop.

Gayla Preston - Farewell, My Friend

2011-10-02T15:29:00.000-07:00

It hit me hard when I learned Gayla Preston of Ohio died a few days ago. I knew she had advanced disease - heck, most of us do. I knew she had only one kidney. I knew she was going from doctor to doctor trying to get something to help her feel better... something to make her feel like getting up and doing things she used to enjoy. She was barely over 50, a time most people enjoy - free of the need to accomplish, the drive to succeed at all costs. That wasn't Gayla's way, anyhow.

Gayla was a practicing Buddhist. She would hope for me that I could learn to detach with love and put more effort into helping others. Oh, Gayla - if only I could! I would love to not be clinging to my emotions just now.

If you have cancer and you correspond with others who have the same disease, you can expect some folks to pass away before you do. There will be losses. It's one thing to know that in my head but my heart does not follow. I just haven't been able to go the philosophical route and gain acceptance in the face of death.

Maybe I'll get there but it hasn't happened yet.

Gayla went to Basel for PRRT before I did. She encouraged me to follow my instincts and get the same treatment. She had lots of tips for me and knew a great deal about the process of sending killer isotopes into the bloodstream to seek and destroy carcinoid tumors.

We talked on the telephone - only a few times but our conversations went on for an hour each time. I was charmed by her wit and impressed with her intelligence.

When I faced the ordeal of writing a series of appeals so health insurance might pay at least some of our costs for PRRT, Gayla helped me with citations and encouraged me to keep on when I was ready to throw in the towel.

When she began to get sicker, we discussed what might be happening with her. I was certain she could find a way around, a way through, a way past this fatal disease. I don't even know the details about how she left this world. I only know she is gone and I will miss her very, very much.

I don't know whether there is an afterlife or if we come back as different people or even in different forms. I just hope that if any of this turns out to be true, I will get to see Gayla again and that she will remember me. Certainly, I will not forget her.

BRP Diary - Problem solved (sort of)

2011-08-13T13:02:00.000-07:00

Top Tip for BRP: Use More Water

I think the secret to easier preparation is to use much more water. I used more than twice as much as the quart suggested by other users. I also made enough for two days at a time. So - I have a large glass jug used to dispense iced tea or lemonade.

Thank you fellow 'noid, Frank Hucks. (see his email below) I found the best way to deal with the sludge. I bought a large Oneida brand, super-fine mesh strainer. I got one shaped like a funnel. It works! It does not remove every trace of grit. For that, you must use cheese cloth but that makes a big mess. I just don't drink the last few drops of the BRP liqud.

I weighed out 120 grams of BRP and put it in the jug. I followed with two quarts and two cups of water. I let the mix sit on the counter for a couple of hours during the morning while I tidied up the house. Now and then, I swirled the mixture in the jug.

Later, I stuck the jug in the fridge and let it set. The next morning, there was nothing floating on the top of the jug. I poured the mix through the Oneida strainer (see Frank Huck's email below) but it still got clogged. I scooped the sludge off and put it into a jar. Then, I rinsed the sieve and poured the rest of the liquid through into another jar.

Previously, I was using the blender to get the clumps of dried BRP to dissolve. With extra water and an occasional swirl, it doesn't seem to be such a problem. The blender left me with a large amount of thick liquid from which I tried to strain the seeds and other grit. Didn't work very well.

Now have to drink twice as much of the BRP liquid but I don't mind. I sweeten it and blend it with cold tea. I put it in a plastic or stainless steel bottle and carry it with me everywhere, sipping throughout the day.

Here's Frank's email to me:

I've finally found a way to mix and filter BRP without getting grey hair in
the process. Went to Walmart and got 2 one Qt. measuring cups and a 6" fine
mesh Oneida strainer. I weigh the BRP and put it in one cup and heat the
water in the second. Then mix well with a whisk and cover with saran wrap
in the fridge overnight. In the morning, there's a very thin layer of thick
stuff on top that is easily scraped off and discarded with a big spoon.
Then I pour it through the fine mesh screen and stir with a silicone
spatula. Most of the other filter clogging junk stays on the bottom of the
measuring cup if you're gentle. The 6" strainer seems to get all the seeds
and it's much faster than the metal coffee filters. When I mixed it in a
quart jar, i could never scrape off the thick stuff on top without causing
it to disperse, and then it was impossible to filter. Hope this helps.
Frank Hucks From: <frankhucks@GMAIL.COM >

Cow Pokes Know BRP

The amazing ability of BRP to stop diarrhea is known to those who handle calves. "Scours," is the common name for diarrhea in calves. The causes are many and can be fatal. Difficult cases apparently are healed by feeding afflicted calves the juice of black raspberries!

This interesting bit of information comes from Dr. Gary Stoner, the foremost researcher of BRP's healthful qualities. His work at Ohio State University is well-known by scientists seeking a natural, non-toxic way to treat cancer and other diseases.

Like many researchers, Dr. Stoner started experiments with rats. Some were specially bred to develop tumors, others were exposed to cancer-causing chemicals or had tumor tissue implanted in their bodies. Stoner's lab found cancer-laden rats who ate a diet of five percent BRP stopped developing tumors in the esophagus and colon.

Moving on to human trials, Stoner gave humans with a cancerous condition called Barrett's esophagus 45 grams of BRP a day for six months. That's the human equivalent of 5 percent BRP. Through blood tests, Stoner found the subjects were absorbing anthocyanins and ellagic acid among other things found in black raspberries.

Unfortunately, the Barrett's lesions were not directly affected but individuals had reduced levels of oxidative stress. What's that? Simply put, it is a condition that makes it easy for cancer cells to grow and spread. It makes oxygen available to the cancer cells.

BRP and Colorectal cancer

Stoner and his team increased the daily BRP dose to 60 grams a day for patients diagnosed with colorectal cancer (CRC.) They documented "inhibitory effects on the colon tumors," but Stoner stops short of saying BRP actually CURES any disease - including cancer. The CRC patients took the BRP for only three weeks before moving on to chemo or radiotherapy.

BRP may be better at preventing cancer cells from growing rather than curing existing lesions. Stoner studied patients with a kind of rectal polyp called adenoma. These polyps are found often among family members and can become malignant if they aren't removed when they're small.

Patients who had these polyps consumed 60 grams of BRP a day for nine months. Not only did existing adenomatous polyps stop growing, new polyps didn't develop.

How much BRP should you take?

Dr. Eugene Woltering, M.D., a renowned carcinoid specialist researching his own combination of non-toxic, natural anti-cancer treatments, suggests one gram of BRP for every kilogram of body weight. Since Stoner got good results with 60 grams, I'm sticking with that level. The stuff is expensive.

For folks who just want to be healthy and possibly prevent cancer cells from invading, 20 grams of BRP might do. Stoner says: "pretty often in the morning and I mix about 20 g of BRP into a smoothie (composed of ground berries of other types, kiwi and apple juice). I can't even taste the BRP in the smoothie so this is a much preferred method for me!"

Something more about BRP

2011-07-29T10:37:00.000-07:00

BRP Diary
It turned BLUE!
At the risk of appearing fixated on my own poop, I must relate that my stools no longer are dark brown. Now they're BLUE. Yep - blue as blueberry pie. But still, it's a one per day movement and that's a continuing benefit, the way I see it. I (heart) black raspberry powder.

Something more: I flushed only twice in the past two days. I'm talking about the characteristic feeling of heat, sometimes accompanied with turning red in the face and chest, associated with carcinoid.

Both times were due to stress of one sort or another. I was outside in the 102-degree heat, getting bird seed, deer feed and water to the animals suffering now in the worst drought our area has known in decades. When I came back inside to the blessed air conditioning, I collapsed in a chair and minutes later felt the familiar heat spreading from my midsection to my chest and face. That was day before yesterday. I had no more flushing that day.

The second flush was yesterday, brought on by someone berating me on the telephone. I felt I was being unfairly attacked and while we were arguing, I felt the flush coming on. It is well-known that emotions can trigger a flush - or worse. It was somewhat slighter than the previous day's flush.

Prior to BRP, I was flushing in the early morning - jolted awake at 4 a.m. by an intense rush of heat and cramps in one or more legs. I also flushed during the day at least once, usually more like four times. While other mid-gut carcinoids flush frequently once the liver has been invaded with tumors, my flushing began only four months ago and has remained less troublesome. I don't turn red but I do feel the heat and throbbing in the face and head.

It's too early to know whether the black raspberry powder is really diminishing both my diarrhea and flushing but so far - so good.

BRP alters genes
Researchers say genetic changes lead to the production of cancer cells. Dr. Gary Stoner at Ohio State University has conclusive evidence that a diet high in BRP restores some damaged genes to normalcy in animals with cancer. Google: Gary Stoner and black raspberry for a variety of articles about his work.

Someone with carcinoid says they don't know anyone who's achieved stable disease, much less reversal, by ingesting BRP. But Dr. Eugene Woltering, a well-known carcinoid specialist, says some of his patients have necrosing (dying) tumors after taking BRP. Woltering himself takes the stuff as a preventative.

Like everything else, BRP probably works for some noids and not for others. I'm just happy that my symptoms are not getting worse. Indeed, they seem to be getting better and I've been taking BRP for less than a week. Stay tuned.

More about BRP

2011-07-28T00:23:00.000-07:00

Tips for handling Black Raspberry Powder

Thanks to fellow noid Frank Hucks for some good information about Black Raspberry Powder (BRP.) I complained that getting the precious liquid from the powder is an ordeal. Frank responded with some handy tips and more information on where to buy BRP. He even agreed to include his email address in case you want to contact him directly.

Lucy,

I had the same severe problems you have. The gold coffee filters are
impossibly slow. And the cheesecloth is a horrible mess. I finally had
success with a 6" Oneida fine mesh strainer and a small silicone spatula. I
pour about half the quart through the strainer while stirring with the
spatula. Then turn the strainer over and rinse briefly under the faucet.
Then I can finish the quart without having to clean the strainer again.
Whole process takes maybe two minutes. And no seeds come through.

Also, I've found that letting it brew in a one quart measuring cup with its
extremely wide opening allows you to pour much more gently without
disturbing the bottom thick stuff quiet as bad.

I put the powder in the quart measuring cup and add just a very little water
and stir with a whisk to dissolve all the lumps into a thick paste. Then
you can add the rest of the water and get a good mixture.

Where to order BRP
Frank says:

I get mine from BerriHealth, www.berrihealth.com. It costs $340.50 for 3 kilos packed in 500 gram packages. It's just like you say, hard as a brick. But when I cut the top off, some bags break up easily by hand, and others I put in a gallon ziploc and pound lightly to break it up. Some bags filter easier
than others,

From: Frank Hucks <frankhucks@GMAIL.COM>

Please note: Stokes Berry Farm is another source.

Black Rasberry Powder - can it keep me from chemo?

2011-07-26T09:29:00.000-07:00

Black Raspberry Powder fights cancer

OK - we've heard about miracle cures before but here's one that seems to be working for a great many folks with carcinoid and other cancers. The stuff that makes the black raspberry black appears to be anti-angiogenic. In other words, it prevents tumors from growing blood vessels, therefore keeping them small. I haven't found a great deal of evidence that it causes the tumors to go away but I'll take "small" as opposed to "enhancing."

Google: Gary Stoner and Black Raspberry Powder if you want to research these claims.

My BRP DIARY

July 20, 2011
Day one - I begin the tedious task of preparing BRP. Just getting the stuff out of the freeze-dried-frozen-and-vacuum-sealed bag is a chore. We resort to wrapping the bag in towels and beating it with a wooden mallet. There are chunks but there is some powder. Be sure you don't put a hole in the bag the BRP is in this stuff stains anything it touches.

Yesterday, we bought a gram scale. In fact, we bought two. One is a detachable cup that allows you to weigh liquid and powder. I like this one better than the flat scale with tiny buttons that are hard to read.

We do the math (using a calculator) one gram of powder to each kilogram (2.2 lbs) of weight. So, 157 lbs. equals 71.5 grams of powder to go into the quart jar of warm water. Yikes! That's a lot of powder - about a quarter cup at least.

Careful, careful so as not to spread the intensely purple stuff around. Don't splash it or whatever it hits will be blue or purple forever more.

We use purified water warmed in a kettle. Woltering says tepid, not hot.

I put the BRP into the quart jar of water where it all sits, not dissolving entirely. Chunks the size of cherries float undissolved. I shake the stuff vigorously. No change. I empty the contents of the quart jar into my blender and pulse it a few times. Bingo.

Now we have uniform sludge of a dark purple hue. And another utensil to rinse clean of the purple, granular powder. I poured this mixture into a wide-mouth quart jar and placed the lid on it. Into the refrigerator it went for an overnight rest.

Next morning, I get out an old cafeteria tray to work on. I pour the sludge through a food mill strainer but it's holes are too big so they are not filtering out the finely ground seeds and hulls.

For those who don't know food mills - it's a bowl shaped gadget with a crank handle on top. The crank turns a blade that squeezes fruit or vegetables through the sieve so seeds and peels are kept from going into your jams and preserves.

I removed the crank and just used the sieve, which has some small holes. I spread a double layer of cheesecloth across the basin of the food mill sieve. I slowly pour the jar of BRP into the basin. It looks like a very thick, preposterously purple milkshake.

It sits there without dripping a single drop of its precious juice through the cheesecloth. I stir it a bit with a wooden spoon,which will forever be used for this purpose because it is going to be purple from now on.

A few drops trickle into the stainless steel bowl. I cover everything with waxed paper and go on to other pursuits for a couple of hours. When I return, there's a pitifully small pool of dark juice in the bottom of the bowl.

We try various strainers and sieves but nothing works very well. I add another cup of purified water and stir the sludge. It drips more easily. Hours later, there's about 3/4 of a cup of juice in the bowl. I stir the sludge and get a few more drops. While my husband researches filtration machines on the Internet, I continue stirring.

Finally, in frustration, I grab the cheesecloth and bring the top edges together. I begin to squeeze and the juice starts seeping out all over the bag. I continue squeezing, giving my hands and fingernails the look of someone in heart failure.

Finally, I have about a quart of liquid to sip throughout the day. I combine it with sugar, yum. Splenda, yum. Iced tea, yum. Finally, at the end of the day, I guzzle what's left with no sweetener and find it just fine as is.

Day Two
I'm suprised to find dark stools in my toilet bowl. Normal-looking poop! Not purple. Just that normal brown color we've all expected to associate with our body's waste products. And the odor is nowhere near what it usually is. (Yay!)

Day Three
I've worked out a routine of sorts. I mix up the water and powder in the blender and put the lid on it and stick the whole thing in the fridge in the morning. Before I go to bed, I strain the juice in the food mill with the cheese cloth. When I wake up, there's a stainless steel bowl of purple juice waiting for me to sip through the day.

I drink a juice glass of it first thing. Then I set about mixing up more water and powder to set in the fridge to "process."

Day Four
Everything fine. Stools loose but not diarrhea. Still dark, despite the octreotide. No problems.

Now to find a better filtration system. I'd love to hear from anyone experienced in filtering sludge.

THIS IS WAR AND WE ARE THE TARGETS

2011-07-09T22:24:00.000-07:00

Tell me how to fight back!

Americans with life-threatening illnesses and anyone over the age of 60 needs to be aware that our nation is going to war - against US!

This is not a Democrat vs Republican battle. It is a war waged by powerful forces against those who have the least amount of power - the sick and elderly. I never thought it would come to this.

As I write, those powerful forces are working to ensure the entire burden of healthcare costs will be covered by us - the folks with cancer, heart disease, the elderly, anyone with a disability of any kind. The wrongdoing is on both sides of the aisle in Congress and the Senate. I wish very much that I could say the president is with us but I fear he is caving on important matters, ostensibly to keep the government running - even though it is not running well at all, in my opinion.

Even AARP (American Association of Retired Persons) recently agreed on cuts to Social Security if that concession "allows AARP a seat at the table" where policy will be decided. The very organization many of us trusted to fight for us has thrown us under a runaway bus.

Who are these powerful forces?
Anyone involved in profiting from the health of U.S. citizens: hospitals, drug and equipment manufacturers, insurance and health administrators who handle government and private contracts related to health care. Dentists, doctors, nurses, and other providers are in the mix, although they may hold little more power than patients at this time.

These folks decide what the market will bear. They charge top dollar and have no qualms about setting the fees as high as they can. Have you priced any of the newer cancer drugs lately? How about a simple hernia surgery?

How do these guys get so much power?
Lobbying. These are the folks the Supreme Court recently gave their blessing to, saying they can pretty much buy any elected official who is willing to take their money - without reprisal. Every member of Congress is bombarded by scores of lobbyists "explaining" why their employers' rights somehow outweigh constituents' needs.

I'm not telling you to write your elected officials. So far as I know, most if not all of them do not have our best interests at heart. How do I know? Because not one elected official has proposed any meaningful way to bring down (or even stablilize) the cost of medical care in the US. There are, to my knowledge, no plans being discussed, formulated or promoted to rein in the cost of health care. Not in the House, not in the Senate, not in the white house; not on the state or national levels. All we hear about is cuts.

It doesn't matter whether the Democrats keep the Republicans from scrapping Medicare as we know it. It won't matter if we chisel away at Social Security checks. None of this matters because we will not be able to afford any kind of medical treatment at the rate things are going. The only folks who will be able to afford anything stronger than an aspirin will be corporate bigwigs, lobbyists and those elected officials with gold-plated benefits.

The only thing that matters now is learning how to stay alive.
I was active in the AIDS community in the mid-80s and I saw the birth of buying clubs and centers for free or low-cost treatment. Those were grassroots efforts because nobody in the government was helping folks who had AIDS. They were modern-day lepers - untouchables.

Sadly, that attitude now is directed at the sick and elderly and it's gathering momentum at the very time when Baby Boomers need medical care and retirement funds, including Social Security. There's a growing wave of resentment that folks who are ill or elderly are "draining" the economic system. Medicare and Social Security are wrongly called "entitlement programs." They are not - we paid (and continue to pay) into these systems but costs are rising so relentlessly that the systems are failing. That is NOT something we caused. What caused it? Failure to control costs. Duh?

In countries where all citizens have the right to affordable health care, government controls the costs. We do not have the political will to even discuss this measure in the United States. What that means to me is - we will have to find ways around this dilemma or get sicker, then die sooner than we should. It's already happening. This is the ultimate price for turning a blind eye to greed in the health care industries.

I'd love to know how you plan to get treatment in the near future. I know I will not be able to pay those budget-gobbling health bills much longer. My husband and I have health insurance. We've saved money and he still works full-time. How anyone with reduced income is going to cope is something I can't imagine.

Taking a Break from Carcinoid

2011-07-04T16:59:00.000-07:00

Grand Tetons, Jackson Lake

Almost doesn't look real

I was there when my husband took the photo. So I know it was just thatbeautiful. The weather was perfect at 74 degrees and the sun was smiling downon us as we made our way from Mammoth Hot Springs Lodge in the northern part ofYellowstone National Park down to Jackson Hole, Wyoming where the airport'slocated. We spent a week enjoying the combination of vacation and a reunion ofmy husband's family. We stayed at Old Faithful Inn and Mammoth. Both places aregreat and easily handle hordes of visitors from mid-May to the lateSeptember.

If you have only one choice, make it Old Faithful. If you havetime, start at Mammoth and work your way down to Lake Yellowstone Hotel andCabins or Jackson Lake Lodge in the Grand Tetons National Park, adjacent toYellowstone. Be prepared to crawl along the two-lane road winding through thepark. Bison and elk have the right away and often they saunter down the centerstripe. Bears can be glimpsed from the roadside, even a wolf here and there.Pronghorn antelope and deer, marmots and white pelicans attract manyphotographers and sightseers.

What does this have to do with carcinoid?

Just a reminder that it's important to get away and forget for a whilethat you have this disease. Tromping around bubbling mud pots and plumes ofgeyser-driven steam certainly was a worthwhile distraction. The altitude wastroublesome for a couple of days and the air was much drier than I was used to.But the glorious weather and postcard scenery made me want to stay there, stopthe clock and drink it all in for as long as possible. I hope you will takeyourself to Yellowstone or one of the other wonderful national parks, thissummer.

If you're interested in Yellowstone, call toll-free866-GEYSERLAND (866-439-7375 or go to YellowstoneNationalParkLodges.com.

We'll get back to the business of living with neuroendocrine cancernext week with Part 2 of the NanoKnife treatment, featuring a Q&A with Dr.Sandeep Bagla of Innova Hospital, Alexandria, VA.

Ask your questions by leaving me a comment on this blog. Have a greatsummer - the best one, ever!

Lucy Does NanoKnife

2011-06-17T09:50:00.000-07:00

Pre-surgery moment at the National Museum of the American Indian

ALEXANDRIA, VA (June 16, 2011) -- I have a couple of holes poked in my chest and belly. But no pain.

Yesterday, I had NanoKnife (more officially known as Irreversible Electro-Poration) to zap two small tumors in my liver. I went under general anesthesia and woke up choking. Fluid retention is common after surgery, but usually it swells up the hands and feet. In my case, the fluid goes to my lungs. I needed an injection of Lasix to breathe. The same thing happened when I had de-bulking surgery in Kenner; so I know this reaction was not related to the NanoKnife procedure.

And that was the sum total of my problems with the treatment. No pain, no soreness, absolutely no other problems. Google NanoKnife for more detail on how it works

Pre-op at Inova Alexandria Hospital. Surgical Nurse Dorrie Canipelli, Lucy, and Dr. Sandeep Bagla

My doctor is Sandeep Bagla, M.D. He's an interventional radiologist so skilled in the use of NanoKnife and other types of ablation that he teaches other doctors to use NanoKnife. One of Dr. Bagla's recent cases involved complete excision of a large pancreatc mass. That case made the CBS affiliate TV news while I was here in D.C. To see more about that ground-breaking procedure go to NanoKnife TV story or video.

Post-op with P.A. Reggie Lewis and spirometer

When I started researching treatment options, I contacted several facilities where NanoKnife is offered. Dr. Bagla was first to return my call and spent about an hour on the initial consultation. He answered every question to my satisfaction. He assured me Inova Alexandria is a first-rate hospital and that I would be well cared for. Everything he said was true.

Click here for Inova

Look who came by to see me before I was discharged from the hospital.

More about NanoKnife: Not everybody is a candidate. Unfortunately, more than five tumors in one organ may be too many. But if your tumors are small (under 3 cm) and you don't have more than five lesions, whether the tumors are in the lung, pancreas, kidney, liver, heart or elsewhere this may be the new and most effective treatment.

Contact Dr. Bagla's office at (703) 504-7950

Tomorrow: Look for more of step-by-step account of my experiences.

The Amazing Medicare Maze

2011-06-11T20:13:00.000-07:00

No Medicare Policy Responsible for LAR Restrictions?

Medicare must train personnel to dodge questions. I've been trying for months to find the official, written policy allowing Medicare to block reimbursement for a drug carcinoid patients need. Scores of people with carcinoid cancer say they can't get Medicare to cover enough octreotide to alleviate their symptoms.

In most cases, they've been getting Sandostatin (brand name of octreotide) LAR (long-acting repeatable) injections at a doctor's office. Typically, a carcinoid patient needs 30 mg a month or more of Sandostatin LAR to keep from flushing and having diarrhea a dozen times a day. Medicare only covers 20 mg a month in Texas and several other states.

In some cases, two injections per month are required. It's not unusual for a patient to require two injections of 60 mg (a total of 120 mg) per month to ease the symptoms of our disease.

Sandostatin is one of the more expensive drugs on the US market, ranging from $1,000 to three (or more) times that, per injection. If Medicare only covers 20 mg once a month and you need 120 mg twice a month, you'll need thousands of dollars every month just to keep your symptoms manageable. You'll need $100 grand real fast. Got that lying around?

Things are no better for octreotide acetate users.
Medicare in Texas only covers a monthly allotment of 11 vials of octreotide acetate - the self-injected form of Sandostatin. At least it's available in the generic equivalent. It's also the type of octreotide used in the continuous infusion pump, which is how I get my octreotide - a vial per day.

When my husband said he wants to retire, I had to find out what this means to our budget. I launched a fact-finding mission with Medicare. I wrote everyone: the Secretary of Health and Human Services, Director of Medicare, the plan administrator in Texas - a private corporation called TrailBlazers.

I want to know: which regulation limits coverage for octreotide prescriptions and what can I do about it? Seems simple enough.
Most government agencies refer you to a regulation by number, source or code. "Look in the manual number umpty-dozen hundred; paragraph 666 and sub-paragraph ..." But in this case, there's apparently no official number or code or any source.

One of my letters landed on the desk of a Mr. Adams, who works for TrailBlazers. He was not able to answer my question, saying that his organization has no blanket policy addressing octreotide doses. He said I would have to contact Medicare for more clarity because they formulate the policy. So I wrote the Medicare director's office in Washington, D.C.

Yesterday (June 10, 2011) a woman from the Medicare Hotline called to tell me there is no Medicare policy regarding octreotide dosing. I asked to speak with her supervisor who was only slightly less informed. She told me Medicare only covers oral chemo drugs! (Not true - people get injections of octreotide; just not in the amounts some need.)

Octreotide, she said, is not one of the drugs listed in her manual and that means each case has to be considered separately. "A doctor has to say you need it," she said.

What can I do about it?
Since that seems unfair and still doesn't answer my question, Supervisor Christine suggested writing my Congressman, the President, etc. Almost at the end of our talk, she noted that TrailBlazers had sent her my letter and added that TrailBlazers administers the Medicare Plan in Texas. She also said the reason I had not been successful in getting a straight answer out of TrailBlazers is because I used the "wrong mailing address." This is almost humorous because I did get a letter and a call from Mr. Adams, who works at TrailBlazers. He just couldn't or didn't answer my query.

If you'd like to join me in a letter-writing campaign to TrailBlazers, here's the correct address according to Supervisor Christine at the Medicare Hotline:

TrailBlazers
P.O. Box 660156
Dallas, TX 75265

As it is now, a physician prescribing say, 60 mg of Sando LAR gets a call from the "provider interface" with Medicare saying only 10 mg will be covered by Medicare. I've not been able to see any written communication to this restriction but it's what I've been told by patients in six different states. So apparently there's no rule or numbered regulation detailing why this restriction exists or who originated it. The FDA wrote me saying they uphold manufacturer's recommendations. In this case, that's the world's largest drug manufacturer, Novartis. They say 20 mg a month is the right dose to alleviate carcinoid symptoms. What has the FDA to do with Medicare policy?

Medicare patients who need larger doses either have to come up with thousands of dollars a year or they can appeal for reimbursement each and every time they get a shot. Their doctor has to appeal it with them, of course. That puts a huge burden on the doctors and their staff. It needlessly stresses carcinoid cancer patients and for what - so that someone can say they "saved money" by cutting back on the drugs some cancer patients were getting?

What happened to the Paperwork Reduction Act? What about the time required to review these appeals, not to mention the postage, paper, bookkeeping, etc.?

Health Care "Reform"
Like many of us, I was overjoyed when the "pre-existing exclusion" was scrapped - as it should be. I figured there were going to be some provisions in the new health care act I wouldn't like, just as I knew Medicare's rights to collective bargaining on drug purchases had been left on the table. But I had no idea how bad things would get.

It wouldn't be SO bad if the US didn't pay outrageous sums for pharmaceuticals. I grudgingly agree with those who predicted health care reform in the US could not stop rising costs or offer the universal coverage we all need.

But what exactly is happening here?
Please, somebody - prove me wrong because I suspect there's no written policy for a reason. Nobody can be pinned down on this. Medicare says, "we're not responsible." The plan administrator says, "we're just following orders." But there is no written order that I could find.

Could it be "they" looked for a category of patients who probably wouldn't squawk too loud or long. "They" simply decided to restrict patients to the FDA guideline, which actually is the mfg guideline, which is outdated and wrong for many, many patients.

This ain't reform - it's war! Your local media outlet is the only weapon left. Unfortunately, this is a complex problem and it takes time to explain. But if you want to keep it short:

(1.) Medicare patients with a rare cancer are being denied coverage for the drugs they need.
(2.) No official admits there's a policy on the restriction but it is being enforced.
(3.) The restriction in coverage is causing needless hardship for patients and their doctors.
(4.) "Hardship" means tens to hundreds of thousands of dollars a year to cover prescription drug costs. Or what? Or go into decline and die sooner than you needed to. That's pretty much it in a nutshell.

What about supplemental insurance?
Theoretically, if I have a supplement to Medicare Part D, I can get coverage for the part Medicare won't pay. OK, say my part of the prescription is 20% and the supplemental policy covers the rest. I get my 11 vials of octreotide acetate per month and pay 20% of the cost for the remaining 19 vials I need. At $1,000 per vial (retail price last time I checked with a local drugstore) that means I pay $200 per vial for a total of $3,800 per month. More than $45,000 per year. It may be that insurance can get a lower price for these vials of octreotide but it will still be unaffordable at half price - for me.

I'm not even talking about the Medicare premium, the supplemental premium (if I can find an insurance company to take me,) syringes, pump cartridges, the DONUT HOLE!

And the alternative plan is to give me a "voucher" for less than $2,000 a month?

Please add your comments.

Didn't you have PRRT?

2011-06-06T16:15:00.000-07:00

Q: I see you are planning to have a NanoKnife procedure on your liver tumors. Didn't you get PRRT? Did it not work?

My friend's question is valid and deserves an explanation. Yes, I had three rounds of 177-Lutetium beginning in July 2009.

I had the last round in March 2010. My disease has been stable, so far. I had four tumors in the liver going into PRRT, I have two showing now. So I guess you could say it was 50% effective regarding the liver tumors.

The fact that no new tumor growth showed on the 68-Ga scan in March 2011 means it was effective in slowing my progression, at least in my opinion.

Did PRRT destroy all traces of disease in my body? No. I didn't expect that it would. I just wanted to stop progression if I could and I believe that happened. But this disease keeps on, whether you have tumors or not, symptoms or not.

I am interested to see what happens with the flushing and leg cramps after NanoKnife. I began flushing about two months ago. The leg cramps are more recent - a few weeks, now. They are excruciating and wake me up in the early morning. I've been eating a banana before bed and the last couple of days had no cramps.

Q: Do you know anybody who's had NanoKnife?

I spoke with a man who was diagnosed with pancreatic cancer. He had a large tumor encasing an artery and was told he could not have surgery to remove the tumor.

He said an interventional radiologist explained there might be ways to address his tumor besides the traditional surgery. One common way to surgically treat pancreatic cancer is with a procedure called the"Whipple Maneuver," which entails removing most of the top part of the pancreas and leaving a small part of it to help with digestion.

Radio-frequency ablation (RFA) along with CyberKnife, also is used to whittle on the pancreas. Both of these methods, while effective alternatives to "cold knife" surgery, can also damage adjacent tissue.

Irreversible Electro-poration (IRE) is the technical name for what NanoKnife does. IRE does not damage adjacent tissue and it can be extremely effective in ablating tumors next to large blood vessels and other delicate tissues.

The former patient told me he had some back pain following the procedure and required a different kind of treatment to alleviate his discomfort. He didn't know exactly what was done for him or why he had the pain but he seems fine now.

The fact that he had an inoperable case and was able to get virtually all of his tumor removed without apparent damage to adjacent tissue makes me feel good about my decision to get IRE in a few days.

Q: Aren't you afraid to do this new procedure? What if something goes wrong?

Sure, I'm not without some sense of caution. I've done considerable homework and I'm not jumping into this treatment without knowing what some of the problems may be. I've read that there can be bleeding, especially if the blood-rich liver is getting "knifed." There may be muscle pain from the electrical current used to "zap" the tumor. Pain where the probe goes into the body is expected - they're making a hole in you.

But I've had two full abdominal surgeries - open from breastbone to pubic bone - and that's pretty hard to recover from. IRE usually requires only an overnight stay in the hospital.

Like all hospitalizations, things can go wrong: infection, getting the wrong medicine, etc. But I don't consider these potential problems to be deal-breakers. Everything's a trade off.

Farewell Dr. Kevorkian

2011-06-03T16:39:00.000-07:00

I didn't know Jack, but I wanted to...


Dr. Jack Kevorkian 1928-2011

by Lucy Wiley

I think he was a true American hero who was vilified for being ahead of his time. If you saw the HBO special with Al Pacino as Kevorkian, you know what I'm talking about. If you think he was an evil madman, read no further.

Like a lot of groundbreaking geniuses, Dr. Jack Kevorkian was his own worst enemy. He didn't scare easily, and he had little to lose by defying folks who want to keep us in the Dark Ages. As a young pathologist, he became obsessed by death. A lot of young people do. Some become famous musicians, writers, artists and actors. Usually, this obsession is replaced by something more acceptable and useful.

For Kevorkian, death changed from a fascinating and uncontrollable force to the ultimate comfort for suffering souls with no way to end their misery. Some other cultures, the Netherlands for example, already have a compassionate and modern outlook on allowing people to end their lives safely and humanely. The US lags behind in this and many other medical advances.

There are many reasons people choose death over life. Not all these reasons are sound or acceptable and certainly, anyone with a long and healthy life ahead of them is not a suitable candidate for what is now called "physician-assisted suicide." But what about people with terminal illness for whom a few more days or weeks just prolongs the agony of a body shutting down?

What good is served by making these folks persist when they would rather let go? When my time comes, I hope for a smooth transition with a minimum of discomfort. Most of us would like to die surrounded by loved ones at home or in a similar setting. That's not the way most of us go.

In a hospital with machines and frantic personnel, perhaps an anguished loved one nearby: that's the way most of us go. At least now we can contemplate alternatives and many of us will seek a more humane way to end our lives when the suffering becomes too great. Some of us may be helped along with the aid of a caring physician or loved one.

To the extent that we even consider taking a proactive role in our own deaths is partly because Dr. Kevorkian bravely took on the fight for our right to make this choice.

Thanks, Jack.

Read more about this brilliant, eccentric man:
http://www.thekevorkianpapers.com/papers

Women need breast shields for CT

2011-06-01T16:41:00.000-07:00

Women with carcinoid are more likely to develop breast and other secondary cancers.

That's a worrisome fact. But you can do some things to protect yourself against radiation from certain radiographic scans. Radiation is known to set off the chain of cellular reactions leading to cancer.

Everyone with carcinoid knows we are supposed to get regular scans.
Opt for MRI if your doctor agrees. It does not involve radiation. However, some folks have trouble from the contrast, which can damage kidneys, skin and other organs. So keep scans in general to a minimum.

When I was diagnosed in 2006, patients at a major cancer center were getting scanned three and four times a year. Generally accepted protocol has dropped that rate to twice a year in most cases; once a year for many. Why not ask your doctor if you can get scanned on an annual basis? He or she may agree. One thing about carcinoid - it generally is slow-growing.

If your doctor prescribes a scan of chest, abdomen and pelvis, you might ask to have the scan not include your breast area. But that is not as effective in reducing radiation exposure as wearing breast shields, according to a study at Memorial Sloan-Kettering.

Did you even know breast shields exist?
I've never been offered breast shields. Have you? Bismuth breast shields reduced skin entrance radiation to the breast by 38 percent without increasing overall radiation dose, according to the study at MSK, where breast shields are used for all female research patients up to age 90 who undergo chest CT examinations.

"No more radiation than a chest x-ray."
We hear this comparison all the time. It's meant to mute concern over encounters with radiation. But what if you've already had a bunch of chest x-rays or the equivalent over your lifetime? This question is especially important now that two out of three passengers will get a dose of radiation in US airports this year.

Scientists can't agree whether the "back-scatter photo x-ray" is putting travelers at increased risk for cancer or other diseases. While they debate the issue, here's something to be aware of:

Airport Screening is Optional
Sure, you'll spend even more time in line getting "wanded" or "patted." But that might give you more peace of mind. Defenders of the scanning machines say you have to pass through 5,000 times to get the radiation dose "equivalent to a chest x-ray."

But about one person in 20 is exceptionally sensitive to radiation and there's no way at this time to determine whether you are in this category. Right now, there 52 scanners are operated in 23 US airports. By the end of 2011, there will be 1,000 scanners in operation at virtually every airport of any size.

You can bet I'll be asking for some bismuth breast shields next time I get medical scans and security folks can just grope away on this old body when I get to the airport.

Avoid Hospital Infections

2011-05-31T15:05:00.000-07:00

This is Dangerous!

Question: I went to a San Antonio, TX hospital for CT last week. The radiology tech put my IV in without wearing gloves. I asked, "where are your gloves?" He ignored me. I pushed, "they're required for your safety as much as mine." He acted as though he had not heard a word and went on about his business. Nobody else was within earshot.

After he took out the IV (ungloved) my arm bled despite the pressure, gauze, etc. He mopped my arm with an alcohol swab. Never did see him in gloves. It was nearly 7 p.m. and I had been there since noon so I just left.

What should I have done?

Answer from a Registered Nurse:

Hmmm…no gloves for an IV start? Yeah, that’s pretty unsound practice; they’re not called universal precautions for nothing. I would’ve told him to step away from me, and if he wasn’t going to wash his hands and wear gloves, then he was to go get his supervisor.

If he didn’t have a supervisor, then I would have told him to get the “House Supervisor”. In any hospital, there is a House Supervisor (sometimes called Nursing Supervisor) that’s responsible for administration of operations 24x7. I’d guess at that point, he would have probably would’ve put on some gloves.

That your arm bled after removing the IV probably had more to do with the gauge of the IV (needle) than the absence of gloves. Also, wiping with and alcohol swab usually knocks off any clot, so direct pressure after the swipe it usually necessary too.

Do you know someone who had a hospital infection?

Most of us know at least one person seriously harmed by "hospital bugs" including MRSA, Clostridium Difficile. Staph. Aureus. Since I was diagnosed in 2006, I've known a half-dozen noids who went into the hospital in fairly good shape and died either in the hospital or soon afterward from hospital-induced illness known properly as "nosocomial infections."

In the U.S. each year, more than 1.7 million patients contract nosocomial infections, and 99,000 do not survive. Some sources day the figure could be twice that high. http://www.cdc.gov/ncidod/eid/vol7no2/wenzel.htm

Numerous publications point to simple handwashing, even using the alcohol gel stuff, as the foremost way to reduce hospital infections. A close second preventive would be wearing protective gloves.

In the USA, the Occupational Safety and Health Administration mandates wearing gloves to reduce the risk of bloodborne pathogen infection. Gloves reduce the likelihood that microorganisms on the hands of personnel will be transmitted to patients during invasive or other patient-care procedures that involve touching a patient's mucous membranes and nonintact skin. Gloves also make it less likely personnel will transmit microorganisms from one patient to another. In this situation, gloves must be changed between patient contacts, and hands should be washed after gloves are removed.

Wearing gloves does not replace the need for handwashing, because gloves may have small, non-apparent defects or may be torn during use, and hands can become contaminated during removal of gloves. Failure to change gloves between patient contacts is an infection control hazard.

Lucy's suggestions:

(1.) Ask everyone who comes into your room to wash or use alcohol gel on their hands, especially before they touch you or any medical equipment linked directly to you.

(2.) If someone enters your room with gloves already on, ask them to put on a new set of gloves in front of you.

(3.) Don't let anyone sit on your hospital bed, touch, kiss or hug you. There will be time for affection after you get out of the hospital.

(4.) If possible, leave the room while the cleaning crew is in there stirring up dust and stuff. Come back 15 minutes later, if you can. This may be a good time to walk around the floor, get a coke from the machine (wash off the top of the can) or go down to the gift shop for a while.

(5.) Keep your own hands clean. Try not to touch wounds, sores or anything bandaged.

(6.) Next time someone wants to hook up your IV without wearing gloves, politely but firmly say, "please step away from me and glove up."

Dangerous drug interactions and allergic reactions

2011-05-30T14:32:00.000-07:00

Drugs+Carcinoid - Allergy or Interaction?

After two years on a common anti-depressant medication, I developed a red rash on my chest and back. It itched. I thought at first I had bug bites or was breaking out from some new bath product. I called my doctor, who reviewed the list of drugs I was on. It was a short list, There was only one - the anti-depressant.

"Quit taking it and see if you get better," she advised. After two days, the rash was gone. I was switched to another anti-depressant with no further problems. Why had I developed this rash so suddenly after years of taking the medication without any problems? Can you suddenly develop an allergy to something you've been taking for years?

The short answer is "yes." The long answer involves the immune system, which can be unpredictable and dangerous.

Adverse Reaction
Almost any drug can cause an adverse reaction, ranging from nausea and vomiting to life-threatening anaphylaxis, which means literally "against protection." Anaphylaxis is an immediate reaction to a substance called an anitgen. Symptoms range from skin flushing, difficulty breathing, and fainting.

In severe cases, people go into shock - meaning their blood pressure drops so swiftly they can't maintain life functions. Very tiny amounts of an antigen may set off these reactions. For example, insect bites can cause anaphylaxis if someone is severely allergic to the antigen in the venom.

Hold the EPI!
Normally, treament for anaphylaxis would be an immediate injection of epinephrine, followed by antihistamines, cortisone, or similar drugs. BUT NOT IF YOU HAVE NEUROENDOCRINE CANCER! Epinepherine can trigger an overload of tumor secretions which drop the blood pressure even faster. If you're going down and Epi is the only way to get your heart going again, then go ahead with the shot. But it's a good idea to wear one of those dog tags or medical alert bracelets warning emergency personnel against using epinepherine.

Antihistamines and cortisone don't usually cause trouble for carcinoid patients but they take time to work.

Allergy or Something Else?

A true drug allergy results from a series of chemical steps within the body. It develops two different ways:

The first time you take the medicine, you have no problems, but your body's immune system produces a substance (antibody) called IgE against that drug. The next time you take the drug, the IgE tells your white blood cells to make a chemical called histamine, which causes your allergy symptoms.
A drug allergy may also occur without your body producing IgE, but this is not well understood and I could not find anything about the symptoms of this allergy.

Penicillin and related antibiotics are the most common cause of drug allergies. Other common allergy-causing drugs include:

Sulfa drugs
Anticonvulsants
Insulin preparations (particularly animal sources of insulin)
Iodinated (containing iodine) radiographic contrast dyes (these can cause allergy-like anaphylactoid reactions)

Most drug allergies cause minor skin rashes and hives. A cortisone shot or some Benedryl usually gets you through the episode but be sure to note what caused the allergic reaction and write it at the top of all medical records.

I can't tell you the number of times doctors have told me the red rash I had was from something besides the contrast dye because it didn't happen immediately after the scan.

Delayed Reaction
I react badly to iodine in CT contrast and Lugol's solution, the stuff they give you to drink before the MIBG scan. But my reaction doesn't happen right away. It can take up to two weeks for me to break out in hives. My reaction is not life-threatening but it is dramatic. I turn scarlet red from head to toe and itch like I have a million mosquito bites!

Everyone calls it "allergic reaction" but the common name of this is "serum sickness."

Serum sickness is a delayed type of reaction that occurs a week to three weeks after exposure to a medication or vaccine. The reaction is similar to allergy. The immune system reacts to certain medications or injected proteins in the liquid part of blood (serum) by over-producing antibodies to help protect against infectious or poisonous substances.

Certain medications (such as penicillin, cefaclor, and sulfa) can cause a similar reaction. Injected proteins such as antithymocyte globulin (used to treat transplant rejection) and rituximab (a monoclonal antibody used to treat immune disorders and cancers, including NETs) can cause serum sickness reactions. Blood products may also cause serum sickness.

Serum sickness can be just as troublesome as an immediate reaction and is usually treated with cortisone and antihistamines. I've learned in my case, pre-medication before CT scan is not as important as post-medication.

Post-medication
Please - discuss this with your doctor and arrange for someone to drive you home. I'm not a doctor and can't prescribe any medication. So ask if your doctor thinks my protocol is worth considering before you have your next CT scan if you are allergic to contrast.

I take one 10mg prednisone tablet with an antacid, plus a 25 mg capsule of Benedryl (diphenhydramine) an hour before I'm given CT contrast (after any blood tests required.) I take another Benedryl an hour after the scan. Six hours after the scan, I dose with prednisone and antacid again. Prednisone makes my stomach lining raw, so I always take it with an antacid. Noids should avoid PPI meds but antacids like Zantac (ranitidine) are OK.

Depending on the time of day, I may also take more Benedryl, especially if it's evening. I go to bed and sleep soundly. The next morning, I take a half prednisone (5 mg) and the rest of the tablet that evening. The next morning, I take another half. So far, this protocol's kept me from developing the rash.

I tried dosing less on the day of the scan but it didn't work. I got the rash on my chest and throat. I immediately took Benedryl (twice in a six-hour span) and that stopped it. I'm just telling you what worked for me. In the past, I've had such bad hives my doctor had to inject me with prednisone.

Many side effects are not due to an allergic reaction. For example, aspirin can cause nonallergic hives or trigger asthma. Some drug reactions are considered "idiosyncratic." This means the reaction is an unusual effect of the medication, not due to a predictable chemical effect of the drug. Many people confuse an uncomfortable, but not serious, side effect of a medicine (such as nausea) with a true drug allergy, which can be life threatening.

Dangerous Symptoms

Anaphylaxis, or severe allergic reaction (see below)
Hives
Itching of the skin or eyes (common)
Skin rash (common)
Swelling of the lips, tongue, or face
Wheezing

Symptoms of anaphylaxis include:

Abdominal pain or cramping
Confusion
Diarrhea
Difficulty breathing with wheeze or hoarse voice
Dizziness
Fainting, lightheadedness
Hives over different parts of the body
Nausea, vomiting
Rapid pulse
Sensation of feeling the heart beat (palpitations)

What are the possible side effects of octreotide (Sandostatin)?

You can be allergic to octreotide. That's why it's best when you begin the medication to have a small injection of the drug and wait in the doctor's office to see whether you tolerate it. Most carcinoid specialists start patients with self-injected octreotide acetate for a period of time before they administer Sandostatin LAR, which is designed to break down over time in the body.

Here's official information on octreotide and possible adverse reactions:

Stop using octreotide and get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.
Call your doctor at once if you have any of these serious side effects:

slow or irregular heartbeats;
gallbladder problems (stomach pain);
pancreatitis (pain in the upper stomach or back, nausea, vomiting, fever, bloating, yellowing of the skin or eyes);
thyroid problems (may be detected by blood tests);
low blood sugar (headache, confusion, drowsiness, weakness, dizziness, fast heartbeat, sweating, tremor, nausea); or
high blood sugar (increased thirst and urination; flushed or dry skin; drowsiness).

Less serious side effects may include:

nausea or vomiting;
diarrhea;
mild stomach pain or gas;
constipation; or
significant pain or irritation where you injected the medication.

This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

What is the most important information I should know about octreotide (Sandostatin)?

Before using octreotide, tell your doctor if you have diabetes, gallbladder disease, heart disease, thyroid problems, pancreatitis, kidney disease, or liver disease.
Octreotide is given as an injection under the skin or into a vein. Your doctor, nurse, or other healthcare provider will give you this injection. You may be shown how to use your medicine at home. Do not self-inject this medicine if you do not fully understand how to give the injection and properly dispose of needles, IV tubing, and other items used in giving the medicine. Be sure to follow the instructions for the exact type of octreotide your doctor has prescribed for you.
While using octreotide, call your doctor if you have severe stomach pain, fever, bloating, nausea and vomiting, or jaundice (yellowing of the skin or eyes). These may be signs of serious side effects

Drug Interactions
Octreotide is less troublesome than many drugs. However, the more drugs you take, the greater the risk that something will interact in an adverse way.

For example, octreotide can slow the heart too much if you take it with amitryptaline, a common anti-depressant known as Elavil or Endep, which also changes the heartbeat in some patients. Fainting may be the most common adverse reaction if both medications are taken at the same time.

Contact your doctor immediately if you have chest pain, dizziness, fainting or falling spells, palpitations, shortness of breath or your heart seems to beat faster or slower than usual. This is true regardless of the medications you may or may not be taking. These are serious signs of distress and need a doctor's attention.

The folks at AARP provide a nifty way to check whether your medications might cause adverse interactions. Octreotide with amitryptaline is one of the combos listed as possibly "severe." Go to: http://healthtools.aarp.org/drug-interactions

Medicare - will it be there for you?

2011-05-26T18:39:00.000-07:00

Medicare must change or die
The senate voted 57 to 40 this week to scuttle Rep. Paul Ryan's attempts to kill Medicare as we know it. This margin is way too narrow for comfort. Elements of the GOP want to get rid of Medicare and most other entitlement programs to reduce the nation's indebtedness. What's wrong with that?

Aside from denying care for a great and growing segment of Americans who can't keep up with rising costs, the idea of making everyone "accountable" for their own care is ludicrous. It might make a bit of sense if there were any concrete proposals to cut costs in the GOP plans. But like the environment and so many other matters, Republicans seek only to cut the deficit by not spending a dime. Until we have a way to stabilize - if not reverse - the cost of health care, we'll be trying to bail the Titanic with a paper cup.

Collective Bargaining Could Save Billion$
The Obama administration is not blameless in this matter. In the early deals made to get Obama's health care agenda passed, an agreement was made with Big Pharma to keep Medicare from wrangling on the price of prescription drugs. This policy must be reversed. It could save the US $200 billion a year, according to the Consumers Union Action Fund

Lucysnoidblog does not receive funds or raise money for anyone. However, if you can spare $10 for the Consumer Union Action Fund, it could be the best investment you make this year.

Don't tell me to pay my own way
When there are limits to what a medical provider can charge, I'll be happy to plan for and pay for my own care. But when you're in a game where the rules keep changing to benefit the dealer, the best move is to stand pat.

Some things can't be for profit in this world. One of them is health care. Education is another but that's a subject for a future blog. In countries where every citizen is provided with good health care, the health system is under government control. The government limits what providers can charge and everyone pays higher taxes to support the system.

Are these programs perfect? No. But they do provide services for everyone, unlike our system.

In the US, people who make the most money (earners in the $250K+ group and giant corporations) pay the least in taxes. The government has no control over what things cost in any sector and that's probably not going to change. Those who are not in with the "IN-sured" crowd, are left holding the bag for high-priced health care.

Naturally, they turn to governmental agencies for help. Much has been written on ways the burgeoning group of uninsured elders could reduce their own costs for health care by maintaining better habits, seeking preventive treatment and setting aside money for the future. But all those efforts will be for naught if costs keep going up at the current rate.

We can fix Medicare. Those who can, will be required to pay more for our care. Things must change. But we need help and many concessions from the business end of medical care. We will need a government responsive and responsible to its citizens. Please let your officials know how you feel.

New Study Supports Early PRRT for Carcinoid

2011-05-25T13:24:00.000-07:00

The following study and another recent publication related to carcinoid can be found at http://oncologystat.com/journals/review

In a nutshell, neuroendocrine cancer specialists now can tell which patients are most likely to benefit from PRRT. They also are able to tell who's likely to suffer kidney damage from the treatment and combinations of isotopes seem more effective at stopping the disease. This study involves Yttrium-90 or 90-Y as it often is called.

I Had PRRT
I am asked whether I regret having PRRT (177-Lutetium) because now I am showing signs of progressing diseease (two liver tumors.) I had four liver tumors before PRRT, so I must say it was successful if not 100% effective in slamming carcinoid to the curb.

PRRT is being improved, personalized and made more effective for patients who can afford it. The US needs to get with the program and use this life-prolonging technique. In July, the North American Neuroendocrine Tumor Society will meet at Vanderbilt University Hospital in Nashville. This is an event for health professionals only. No patients allowed.

If the past indicates the future, most of the NANETS members will come to the conclusion PRRT "needs more study." Meanwhile, carcinoid marches on in the US, where we are at least 10 years behind in treatment. The US-developed oral chemo looks good on paper and may eventually yield good results but many folks can't tolerate the side effects and the cost is astronomical.

Thanks to Jude Filler, chair of the Cen-Tex Carcinoid Support Group in Austin for bringing this to my attention. I bold-faced some more cogent parts of the study. - Lucy

Response, Survival, and Long-Term Toxicity After Therapy With the Radiolabeled Somatostatin Analogue [90Y-DOTA]-TOC in Metastasized Neuroendocrine Cancers

J Clin Oncol. 2011 May 9;[Epub Ahead of Print], A Imhof, P Brunner, N Marincek, M Briel, C Schindler, H Rasch, HR Mäcke, C Rochlitz, J Müller-Brand, MA Walter

TAKE-HOME MESSAGE

In this retrospective analysis of patients with metastatic neuroendocrine tumors, response to the radiolabeled somatostatin analog [90Y-DOTA]-TOC was associated with significantly improved overall survival.

SUMMARY

OncologySTAT Editorial Team

Differentiated neuroendocrine cancers often express somatostatin receptor subtypes, providing the rationale for somatostatin-based radiopeptide therapy. One such radiopeptide, ⁹⁰yttrium-labeled tetraazacyclododecane-tetraacetic acid modified Tyr³-octreotide ([⁹⁰Y-DOTA]-TOC), delivered intravenously, binds to somatostatin receptors on the target cell and kills the cells via ß-irradiation. Imhof et al describe long-term outcomes of a large cohort of patients with metastasized neuroendocrine cancers treated with [⁹⁰Y-DOTA]-TOC.

The phase II trial enrolled nearly 2000 patients with histologically confirmed metastatic neuroendocrine cancers (including 25 different subtypes) that had progressed within 12 months of study entry. Patients were recruited from more than 100 centers in 29 countries, but all were treated at the University Hospital, Basel, Switzerland. Patients with a clinical or biochemical response or morphologic disease control (morphologic response or stable disease) to the radiopeptide received repeated cycles.

A total of 2041 patients were screened for eligibility between 1997 and 2010. Of these, 1109 eligible patients received a median of 2 cycles each of [⁹⁰Y-DOTA]-TOC (range, 1–10 cycles).

Morphologic disease control was achieved in 436 patients (39.3%): response in 378 (34.1%) and stable disease in 58 (5.2%). A total of 7patients (0.6%) had a complete remission, including 3 with gastrinomas and 2 with nonfunctioning pancreatic neuroendocrine tumors. All of the complete responders had a tumor score of 3 (on a scale of 0–4), indicating higher uptake of [⁹⁰Y-DOTA]-TOC in the tumor vs the liver. Their median time to progression was 12.7 months (range, 2.1–24.7 months).

Biochemical response was achieved in 172 patients (15.5%), and clinical response in 329 patients (29.7%). Overall, 671 patients (60.5%) had a clinical, biochemical, and/or morphologic response/stable disease, and 206 (20.2%) had more than one type of response.

Longer survival correlated with each type of response. For morphologic responders, the hazard ratio (HR) was 0.46 with median survival of 44.7 months vs 18.3 months for nonresponders (P < .001). Biochemical responders had an HR of 0.75 and median survival of 35.3 vs 25.7 months (P = .023). Patients with a clinical response had an HR of 0.68 and median survival of 36.8 vs 23.5 months (P < .001).

Patients with a high tumor uptake of [⁹⁰Y-DOTA]-TOC, as indicated by a high tumor score, had significantly longer survival after treatment (36.0 vs 22.8 vs 20.4 months for tumor scores of 3, 2, and 1, respectively).

Adverse events included severe transient grade 3–4 hematologic toxicities in 142 patients (12.8%) and severe permanent renal toxicity in 102 patients (9.2%). However, survival did not differ between patients with and without post-treatment kidney toxicity.

These positive long-term results with [⁹⁰Y-DOTA]-TOC allow refinement of its clinical use. For example, the findings indicate that the radiopeptide can be used in the entire spectrum of neuroendocrine cancers. Its use, however, is preferable in subtypes such as gastrinomas, which have high somatostatin receptor expression and radiosensitivity, and, consequently, a higher complete response rate to the agent.

Another preferred group for treatment with [⁹⁰Y-DOTA]-TOC is patients with a high pretreatment tumor uptake score, which was associated with longer survival. Similarly, a high pretreatment kidney uptake score was associated with treatment-related nephrotoxicity. Other predictors of nephrotoxicity in this study were low baseline glomerular filtration rate and older age. These predictors may be useful in identifying high-risk patients who need additional measures to protect their kidneys.

Finally, since response was associated with improved survival, re-treatment may prove valuable in responders. Nonresponders should receive alternative treatment modalities, such as streptozotocin-, fluorouracil-, and doxorubicin-based chemotherapies or kinase inhibitors.

When Friends Pass

2011-05-22T19:31:00.000-07:00

My wonderful, witty and vivacious friend is dying. In my head, I know we all go, sooner or later. But in my heart, I cycle from weeping to anger and back to weeping.

It happens that a newly planted Shumard oak on my property is sick and probably will have to be cut down. I just noticed it yesterday. These parallel lives seem entwined to me.

My friend is still able to speak and seems renewed by a deepening romantic relationship. The excitement of having a suitor caused her to perk up. She seems somehow to be growing stronger even though her body is slipping away.

My tree is full of deep green leaves on slender branches that move gracefully in the Texas wind. This tree looks like it will live forever - until you see the weeping sore on its trunk.

It will bother me to destroy this tree, which never got to full growth. It must be done to protect the grove.

But for my friend, I have no matching act to mark her passing. I can do nothing except to call her, usually in the evenings. We discuss her plans, her treatment, her determination to walk again - although it is unlikely. We chat as though she will be coming home soon. I see no harm in cultivating that illusion.

Sometimes when we talk I feel I am pouring psychic water into her soul to sustain her a little longer. When my tree and my friend stop living, I will plant a new tree, No. I will plant several new trees.

I live in a dry and rocky place. I can never have too many trees or friends.

NanoKnife - futuristic treatment for liver mets?

2011-05-20T21:17:00.000-07:00

Is NanoKnife For YOU?

What is NanoKnife? Learn more from the official site:

NanoKnife® Tissue Ablation System From AngioDynamics

The NanoKnife® System is indicated for surgical ablation of soft tissue.
www.angiodynamics.com/products/nanoknife

I'm in favor of modern advances and tried to stay current on treatment options since I was diagnosed with carcinoid cancer in 2006. I switched from Sandostatin LAR to the pump, got 68-Gallium scan and PRRT - three rounds of 177-Lutetium in 2009-2010.

I didn't want a third open abdominal surgery although I knew I had progressing disease. How did I know? I felt bad. It was about 18 months since my de-bulking surgery and the fatigue had returned. The octreotide pump wasn't helping much with that or the diarrhea. Nothing much showed on MRI (I'm allergic to CT dye) and I didn't want to get socked with more radiation getting an Octreoscan, which also is very inexact.

So I went to Singapore and got the 68-Gallium PET/CT (another modern advance the US is just now obtaining.) It showed four tumors in my liver, some residual mass in the mesentery and some tiny tumors in the mediastinum. After PRRT, I was left with two liver mets. The mesenteric mass is smaller since PRRT and not troublesome because part of it was removed and I have grown my own vein bypass around the tumor. The arterial side was whittled down by Dr. Philip Boudreaux and Dr. Yi-Zarn Wang in Kenner, Louisiana in 2007, but they couldn't cut it all out. The mediastinal mets have been stable for a long time, I've been told.

Now I'm Flushing

I might have rocked along a little longer with two liver mets. Both are under 2 cm, last time I looked. But a month ago, I started having those flushes noids talk about. It began in the early morning, around 4 a.m.

Heat starts in the mid-abdomen - above the belly button. It gets more intense and spreads upward through the chest, up to my neck and head. By the time it scalds my face, I'm tearing off the covers or whatever I'm wearing and flailing for something to fan with.

Sometimes (but not always) I get an intense cramps in my legs, especially the calf. I've learned to lie still and just take the excruciating pain rather than grabbing my leg or trying to stretch. If I wait and breathe deeply, it will pass. If I move a hair, it gets worse and lasts much longer.

Flushing hits me in the afternoon, too. Drinking hot liquids, getting overheated in the sun or just the typical Texas weather, and/or getting tired can bring it on, as well. Ain't menopause. I past that a decade ago.

This means progression, to me.

So I consulted experts beginning with Dr. Eric Liu at Vanderbilt. He administered the 68-Gallium PET/CT (March 2011) revealing two tumors in the top of my liver. One in the front, the other in back. This is half the tumor load I had before PRRT. Same bad guys but two apparently bit the dust.

Dr. Liu suggested a full abdominal surgery to get the front tumor, maybe RFA for the back one and a search and destroy mission for more mets if they're suspected. I have a huge hernia from previous surgery and he would fix that, too.

A second surgeon agreed with using "cold knife" as opposed to any of the electric tools like radio-frequency ablation (RFA.) Dr. Boudreaux would cut only from the belly button up, where the hernia is. He would slice out the liver tumors and look around in the top part of the abdomen, especially at the mesentery, to see if it can be further reduced.

Boudreaux said the lower abdomen would likely be full of adhesions that would prolong a surgery by hours. If he found mets in the upper part of the abdomen that didn't show on scans (not uncommon) he might go looking below my waist.

From what I've read about NanoKnife, it's the superior approach for me at this time. It helps to have small mets and someone who's performed several of these procedures.

I contacted Dr. Sandeep Bagla, in Alexandria, Virginia. He posts on the ACOR carcinoid listserve and helps folks understand things from a radiological perspective.

He offered a two-step procedure with NanoKnife for one met and RFA on the other. He didn't want to tackle them both at the same time. He would do one and I'd stay overnight in the hospital. The next day, I'd have RFA on the remaining lesion and walk out with bandaids over two holes, each about the size of a pencil.

Will Insurance Pay?

That's a good question and I don't have the answer - yet. My caseworker at Aetna's been supremely helpful in the past. She got me pre-certified for 68-Ga scan! She found no mention of NanoKnife in Aetna's clinical policy bulletins. That might mean "ixnay" on coverage.

Dr. Bagla sounded confident he could work with Aetna to get the procedure approved but I haven't heard anything affirmative in two weeks. His associate said I could get RFA on both mets but I can get that much closer to home.

So, I thought I'd better seek another approach. Maybe a different doctor would be able to get insurance coverage. I pulled up a list of places where NanoKnife is supposed to be available.

More than a dozen sites claim to offer NanoKnife. They range from teaching hospitals to well-known cancer centers like Sloan-Kettering, to far-flung hospitals in Harlingen, Texas and Little Rock.

Most sites have a "contact us" feature where you register your info so someone can call you. I dutifully filled out the request on most of these sites.

I'd already failed to find out more about Louisiana State University's claims for Nano-Knife after twenty minutes on the phone. Dr. Boudreaux didn't know much about it and said he had no desire to try NanoKnife. I crossed LSUH off the list.

I'm sure Dr. Liu yearned to find NanoKnife under his Christmas tree but the Vanderbilt Santas passed him by. Maybe next year, this half-million dollar device will be in the sleigh with his name on it.

Baylor in Dallas was listed as a NanoKnife site but past experience with Baylor turned me so far off, I will avoid them for the next 165 years. Of the dozen or so sites I contacted how many responded? ONE!

Dr. Fred Moeslein (Mace-line) interventional radiologist at the University of Maryland Medical in Baltimore, emailed me the next day and later called me. He explained how NanoKnife works and what complications could develop. He looked at the scans I emailed him and said I look like a candidate but he needs a triple-phase CT.

Bleeding is a danger. It happens when you stab a blood-rich organ chock full of vessels. Ask Jack the Ripper.

RFA essentially heats up the tumor and the hole the probe goes into, so tissues are cauterized or sealed off by burning. NanoKnife doesn't have any heat so bleeding is more likely. But not heating up the tissue around the tumor is one of the best things about NanoKnife.

The operator must be skilled and guided by CT scan or ultrasound in the OR. Dr. Moeslein has done the procedure on more than 20 patients, including two noids. He can do both tumors at one time but I still have to stay overnight in the hospital. He also says he's worked with insurance companies and so far - so good.

I'm scheduled for June 2. I know I have two docs on the line. It's best to have a back-up. I'll do an eeny meeny come Monday. Right now, I'm leaning toward Baltimore and NanoKnife twice in one day; one general anesthesia.

Just as RFA replaced cold knife in some cases, NanoKnife may replace RFA. Study up on this if you think it's for you. It's FDA-approved but still considered new and experimental by many.

Health and Human Services on Medicare coverage for LAR

2011-05-18T20:09:00.001-07:00

A Letter At Last
May 13, 2011
Dear Ms. Wiley:

Thank you for writing to the Food and Drug Administration (FDA). This is in response to your letter dated March 18, 2011, concerning Medicare refusing to cover more than a 30 mg dose of Sandostatin (octreotide acetate) per month fo patients with carcinoid tumors. Your letter was forwarded to my office in the Center for Drug Evaluation and Research (CDER) for a response.

As you are probably aware, the FDA approves prescription drug labeling which includes information about the indication (use) and dosage of the drug and is based on data submitted under a new drug application (NDA) for a drug's approval. A drug's approved use and dosage must be supported by clinical data and it is the responsibility of the drug sponsor to provide this data to the FDA. As you know, it is the information found in the FDA approved labeling which most insurance companies use to construct their coverage policies.

Likewise, it is also be (sic) the responsibility of a drug sponsor to seek approval of a new increased dosage limit for their approved drug. The sponsor would have to demonstrate that the drug is both safe and effecive at a higher dosage limit in order for the increase in dosage to be approved for marketing. Please note that the FDA does not have the regulatory authority to require manufacturers to develop a higher dosage for a previously approved drug product.

The FDA approved labeling for Sandostatin provides the following information under the "Dosage and Administration" section for patients with carcinoid tumors:

"The suggested daily dosage of Sandostatin during the first 2 weeks of therapy ranges from 100-600 mcg/day in 2-4 divided doses (mean daily dosage is 300 mcg). In the clinical studies, the median daily maintenance dosage was approximately 450 mcg, but clinica and biochemical benefits were obtained in some patients with as little as 50 mcg, while others required doses up to 1500 mcg/day. However, experience with doses above 750 mcg/day is limited."

You can view entire labeling for Sandostatin at the following link: http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=39866

Please be aware that the regulation of health insurance providers is controlled at the state level. The FDA does not have any jurisdiction over health insurance plans and does not stipulate what drugs insurance companies may cover or to what extent a drug may be covered. We often refer patients to Medicare directly or to their State Insurance Commissioners Office to file a complaint regarding insurance coverage policies.

Thank you again for writing and I hope this information was helpful.

Sincerely,
Donald Dobbs
Consumer Safety Officer
Division of Drug Information
Office of Communications
Center for Drug Evaluation and Research

Dealing with liver mets - what to do?

2011-05-08T20:26:00.000-07:00

The situation: two small (2 cm) metastases in the liver, both near the dome of the liver. Residual carcinoid mass at the root of the mesentery and several small nodes that look like they may be tumors in the mediastinum - the space between the breastbone and spine, housing the heart and where a gallbladder would be if I still had one.

After three rounds of PRRT (177-Lutetium) apparently two of my four liver mets left the building. Yay! The liver mets still loitering have to go, preferably while they're still small. Just in the past month, I started flushing in the wee hours of the morning and sometimes in the afternoon (4 a.m. and 4 p.m.) so that indicates progression. These mets must die.

The tumor encasing my superior mesentery vein and artery is smaller and stable for now, thanks to PRRT. But it's still "hot" on the 68-Gallium scan I had at Vanderbilt, so it will undoubtedly be a problem down the line. The mediastinal nodes have never been biopsied and have remained small and stable throughout everything.

A sizable hernia is bulging out in my upper abdomen along the incision line where I was sliced open like a watermelon in 2006 and again in 2007.

I sought the advice of four surgeons, a nurse practitioner, an interventional radiologist, a regular radiologist, a general oncologist and a chemo-oriented oncologist, along with numerous carcinoid patients and a nuclear medicine doctor. Their advice varied from "do nothing" to variations on the theme of "cut baby, cut."

Variation One: the Full Monty
This would be invasive and take considerable recovery time. It means reopening the entire abdomen and "running the gut," - pulling your intestines out and looking around for any lesions that might not have shown on scans. Anything found would be cut out, one hopes. One of the liver tumors would be cut out from the front. A separate incision from the back or side might be required so the other tumor could be excised.

The mesentery would get scrutiny and if possible, the welter of scar tissue and tumor there would be whittled down. This was done in 07 when it was fairly fat. Now, it might peel off the blood vessels and any collateral veins growing through the tumor tissue might be spared. The hernia would be closed and hopefully sewn together strongly enough to keep me from popping open again.
Bottom Line: Most invasive; hours on the table; thorough outcome.

Variation Two: Half Monty
The lower abdomen would be ignored. The top half, where the hernia is, would be explored for possible mets. The mesentery would get a look and might be addressed. The liver mets would be cut out but the one in the back of the liver would still likely require a second incision on the side. Hernia would be closed.
Bottom Line: Somewhat less invasive, fewer hours on the table, less thorough outcome.

Wild Card: RFA and the NanoKnife
Radiofrequency ablation (RFA) has been used for at least a decade to zap liver mets. It often can be done without a large incision. A small wire is snaked past ribs and into the liver where radio waves cut around the tumor. It cauterizes as it cuts and doesn't destroy much surrounding tissue as a "cold knife."

There have been good outcomes with variations on this procedure such as Cryoablation - freezing the tumor, infusions of alcohol directly into the tumor and the CyberKnife, which is a laser tool that does essentially the same job as RFA.

The NanoKnife is a bit different. It also requires snaking a wire into the liver. Two or three prongs on the end of the wire skewer the tumor. A tiny bit of electricity is passed through the tumor and each molecule of the tumor is "exploded," which makes it die. It leaves surrounding tissue unhurt. Carcinoid tumors have been successfully treated with this method but the technology has not been around long so much is still unknown.

One specialist suggested a combination of these two modalities to get the liver mets only. He would not address the mesentery mass at the same time and would not do anything about the hernia.

On the upside, I'd walk out of the hospital the next day with bandaids over two tiny holes. I can come back another time for a whack at the mesentery and fix the hernia then.

Not In The Cut
I decided against another round of PRRT. It took several months for my blood platelets to normalize after the third round of 177-Lu. I might want to get another blast after tackling the mesentery mass. You can only have five or six rounds per lifetime because the risk of leukemia and kidney damage increases with each treatment.

Another suggestion I rejected is MIBG (a form of PRRT using radioactive iodine) and the oral chemo drug Afinitor. MIBG is not used in Europe anymore because it is generally not considered effective against metastasis larger than one or two centimeters. Although my mets are mostly under 2 cm, I think if 177-Lu didn't knock them completely out, MIBG - a weaker isotope - is probably not going to do the job, either. And there's still a risk of leukemia and kidney damage.

Afinitor is stablizing many carcinoid patients but it has horrendous side-effects for some. I've always been sensitive to medications, so I'm reserving chemo for the last ditch, which I'll cross when I come to it. I don't think I'm nearly there, yet.

Beyond My Control
One of the biggest factors is health insurance. Some policies don't cover RFA if there are tumors anywhere besides the liver. Other policies don't cover NanoKnife at all - it's so new. It's ironic that traditional open abdominal surgery - very expensive by comparison - is usually covered without much opposition, yet something less expensive, less likely to result in complications and apparently just as effective - and may be rejected because fewer doctors know about it.

The power the insurance industry has over what I can do and when I can do it is frightening. The decision should be arrived at by the patient and her doctor, not some guy high in up on the corporate ladder who has never even seen a single scan.

Some noids got RFA and their liver mets grew back after a year or two. Others developed new tumors in other parts of the liver or the body. That's the nature of my beast. I'm just not ready to hang it up and do nothing. What say you?

Comments are welcome either here or email lucywiley@verizon.net.

Medicare policy on sandostatin sees expanded risks

2011-05-05T12:31:00.000-07:00

Lucy's note: this is a guest editorial by Timothy Elliott on a subject few have mentioned in regard to the new Medicare policy, which restricts coverage for more than 30 mg of Sandostatin LAR per month. Timothy is a dedicated cancer advocate who writes on a variety of subjects dealing with treatment options and policies. If you like his article, please write a comment.

Sandostatin, the brand name for a drug called octreotide, is commonly used for carcinoid patients, where it effectively works to stop frequent diarrhea. Recent studies, however, show that octreotide also has been proven to curtail severe diarrhea for patients undergoing chemotherapy and those diagnosed with acquired immunodeficiency syndrome (AIDS).

Although chemotherapy may be of little benefit to patients with carcinoid tumors it can be the right option for patients with other types of cancer such as lung cancer, and several other diseases including mesothelioma.

In 2010 by Dr. Erkan Topkan administered octreotide to subdue or stop the severe complications of diarrhea from chemotherapy. Topkan looked at 42 chemotherapy patients who showed symptoms of severe diarrhea. He treated half this group with 30mg of octreotide for a month, while the other group got 40mg a month. Topkan documented in his study statistical differences in patients receiving 40mg of octreotide.

Researchers concluded that the higher dosage of 40mg for chemo patients with diarrhea was certainly more effective. University of California doctors also studied 52 AIDS patients who reported no relief from anti-diarrhea medication and found that these patients had less diarrhea after they were dosed with octreotide.

Despite the evidence of Sandostatin’s mounting uses Medicare has thus far stood by its’ refusal to pay for more than a 30mg dose of Sandostatin LAR per. A new Medicare policy would be important and beneficial to even more patients than the 8,000 currently diagnosed with carcinoid cancer each year.

Refusing coverage for those now on higher doses almost certainly will force them to seek additional medical care. Some will face life-threatening effects. Others are bound to develop additional illnesses and land in emergency rooms, causing hospital bills to stack up.

Clearly, a swift reversal and new policy is needed to save the lives of carcinoid patients and also alleviate the symptoms of AIDS and other forms of cancer. Medicare policy is designed to save and protect the quality of life for patients around the country. Limiting coverage to only 30mg of octreotide per month neither saves nor protects the quality of life for patients with a number of diseases.

Form Letter For Protesting Medicare Policy

2011-03-16T12:05:00.000-07:00

If you make four copies of the following letter and send it to the addresses listed below, we may avert a medical disaster that will cost more in emergency and hospital treatment than any "savings" derived from this ill-conceived policy.

LW
--------------------------------------------------

Dear Sir or Madam:

I am a patient with carcinoid cancer, also called neuroendocrine tumor. A drug called Sandostatin (octreotide) alleviates some symptoms of my cancer, such as incapacitating diarrhea, wheezing, stomach cramps, heart palpitations, low blood pressure and frequent "flushing" characterized by an uncomfortable red rash that looks like sunburn on the face and upper body.

Recently, Medicare began refusing to pay for more than one 30 mg dose of Sandostatin LAR per month. This is far too little of the medication for many carcinoid patients. Apparently, Medicare's policy is based on FDA guidelines provided by the drug manufacturer, Novartis.

This misguided recommendation by the FDA obviously was made without input from medical experts familiar with this disease. If carcinoid patients suddenly are forced to receive less medication, the results will be life-threatening for some. Trying to cover the cost of additional Sandostatin could cost some patients more than $30,000 a month!

Medicare patients can appeal to their individual drug plans for adjustments in their medication but this will require considerable paperwork and time. Patients dependent on higher doses of Sandostatin LAR don't have time on their side.

Please demand a swift and complete reversal of this potentially harmful policy and the institution of a new policy that covers the cost of Sandostatin LAR in the doses carcinoid patients require.

Signed,

Dr. Donald Berwick, M.D.Administrator
Centers for Medicare and Medicaid Services
7500 Security Boulevard
Baltimore, MD 21244

The Hon. Kathleen Sebelius, Secretary
U.S. Dept. of Health and Human Services
200 Independence Ave. S.W.
Washington, D.C. 20201

Dr. Suzette Lazo, Director
U.S. Food and Drug Administration
10903 New Hampshire Ave
Silver Spring, MD 20993-0002

Christy Shaw
North American Region
Novartis Oncology
One Health Plaza
East Hanover, NJ 07936

.

A Great Letter Protesting Medicare's Regs

2011-03-15T13:44:00.000-07:00

Here's a great letter to pattern by or to borrow from. Thanks a million, Ron Salzman, for letting me post this on my blog. It appeared today (3/15) on the 600-member carcinoid site, ACOR.

Date: Tue, 15 Mar 2011 11:48:19 -0700
From: Ronald Salzman <rsalzman@SIMUTECHGROUP.COM>
Subject: Re: Are we Objects or Agents?

I have written to my 2 Senators and my US Rep.

Dear Senator Gillibrand,

I am a patient with a rare type of cancer, carcinoid or neuroendocrine carcinoma. This cancer while rarely curable is usually slow growing and many patients live 10, 15, and even 20 years with proper management. Since this disease is treatable, many patients return to work or live otherwise productive lives.

Recently Medicare is enforcing a policy that prevents medical experts from providing proper management to patients. In some regions Medicare is now refusing to pay for more than one 30 mg dose of Sandostatin LAR per month. Per one medical doctor, this policy is based on FDA “mandated package insert.” While not a cure for these disorders, Sandostatin alleviates the side effects of these tumors which consist of flushing, low blood pressure and incapacitating diarrhea. If dosed correctly, it can prevent carcinoid associated heart disease. Typically this medication is prescribed on a 28 day cycle. However, there are many patients that require doses every other week at levels in excess of 30 mg for symptom relief. Doses of Sandostatin are monitored not only by clinical response but also by certain biochemical parameters, which if kept within normal range can prevent the more serious consequences such as heart disease.

This misguided recommendation by the FDA was obviously made without input from medical experts familiar with this disease.

To be clear, this policy does not affect me, directly. I am writing this for other carcinoid patients who are on Medicare. If you would like additional information you may contact me or check out the Carcinoid Cancer Foundation web site at http://www.carcinoid.org/

Ronald N. Salzman
(Dx. July ‘06, duodenal w liver mets
Surgery Nov ‘06, primary tumor & gallbladder removal.
PRRT Jan ‘07 to Jun '07)
email: rsalzman@asme.org

Protest Medicare's Cuts to Sandostatin for Carcinoid

2011-03-14T19:36:00.000-07:00

Write to Medicare TODAY
Thanks to Linda Silversmith, Joyce Dobbs, Kathy A., and several other longtime advocates for people with carcinoid, here are some examples of great letters and a treasure trove of good resources for anyone outraged that Medicare is not covering enough Sandostatin LAR to control their symptoms.

Medicare appeals process with link: from Kathy A.
Are you considering filing an appeal to Medicare to try to get coverage for the full dose of LAR that you need?

It's my understanding that the process that's in place for doing something about a Medicare denial of coverage is the following:

1. Ask your doctor to write a letter of medical necessity to explain why you need more than the FDA approved dose of the drug. It sounds like you've done that.

2. If that fails, I think that you can try to submit an appeal to Medicare within a limited time period.

For a general description of the process see:
http://www.webmd.com/medicare/how-to-file-a-medicare-appeal

March 14 email from Joyce Dobbs: trying to use Federal Off-Label Use Act (need a link?)
We are not yet on Medicare, but if we were on Medicare and faced with problems of them not paying for what my doctor presribed, I believe I would try to access the precription (Sando/Lar) by asking Medicare to reconsider and allow me to have the needed meds under the Federal Off-Label Use Act. This topic has been covered before in the archives...
Medicare is under the same guidelines as private insurance companies in that they have to allow terminally ill people to access drugs using the off-label use act.

Thought this might be of use to those of you who are having trouble accessing Sando/Lar in the dosage that your doctor has prescribed.

There is a web site called The Petition Site http://www.thepetitionsite.com/
You can post a petition. You can link your Facebook page to it, and ask people to sign the petition, meaning it won't just be our immediate family signing. Then you can send the petition to our "representatives" who are supposed to represent the needs of those who elect them

Feb 28 from Dr. W - one subject to include
dont forget to document your blood levels --and remember that the receptor is 1/2 saturated at 1000pg/ml, but does not get to 100% until your blood level is at 10,000pg/ml
Eugene A. Woltering MD FACS

Good sample letter of Feb. 24 from Jan Jackson

Dear Senator Franken:
Medicare has this year decided to limit the amount of vital life-saving
medication to neuroendocrine carcinoma/carcinoid patients - cancers which
are grouped under the term NETS. Without the proper amount of octreotide
acetate - especially in the form of Sandostatin LAR - our tumors
metastasize, spread, take over the liver, and even worse, destroy our
hearts.

Our cancers are rarely curable yet many patients live 10, 15, 25, even 35
years with proper management. Medicare has stopped allowing proper
management.

Medicare is saving pennies and costing the system thousands and thousands of
dollars by doing this. Without our medication we need liver embolizations
and surgeries, sometimes liver transplants, numerous other surgeries to
remove tumors and replace heart valves, and sometimes heart transplants.

To save $2,500 - $8,000 per one 30 mg. injection of Sando LAR (yes this is
an most expensive med), Medicare winds up instead paying $50,000 to $250,000
each time for the dangerous and invasive treatments which could be prevented
if we were allowed the two 30 mg or larger injections per month which we
need. This makes no sense.

The people at Medicare do not have a clue about carcinoid cancer (or islet
cell, goblet cell, etc - all NETS), yet they control our lives - and deaths.

For your reference, Steve Jobs of Apple Computer is a NETS patient. He has
islet cell NETS and as you know, recently received a liver transplant
because of it. This is the kind of situation we all face without the proper
dosage of this vital medication.

There is a sizable world-wide network of NETS patients. The Europeans get
all the treatments and shots they require. Why can't we Americans? This is
one of the death panels that people talked about in the health care debate.
Medicare is a death panel.

I represent the Minnesota Carcinoid Cancer Support group. I am in contact
with similar support groups and carcinoid specialists all over the country.
We are begging Medicare to change their policies. We have the possibility
of leading long normal life-spans, so why are they trying to kill us?

I am hoping you will help us. Thank you.

Yours truly,
Jan Jackson
Diagnosed with carcinoid cancer, January, 2001 - a 10 year survivor so far

Medical Rights Center that might help
Last week I was reading my AARP newspaper that they send out and read a story about a woman that was helped with a medical problem. The Medicare Rights Center in New York City. They have called me and will help me and Dr. Jones with an appeal. Maybe
others on the list that are having the same problem as me, might give them a call. The number is 1-800-333-4114,you can leave a brief message with your phone number and someone will call you back.

Here's my own letter to Novartis sent to:

julie.masow@novartis.com

TO: Julie Masow, Corporate Communications for Novartis: I'm a blogger and member of the U.S. carcinoid community. As you may know, many Medicare patients with carcinoid have been told Medicare will not pay for more than 30 mg of Sandostatin LAR per month because Medicare must adhere to this dose, as Novartis recommends it in their prescribing information.

Some carcinoid patients require far higher monthly doses of Sandostatin LAR to alleviate the symptoms of flushing, diarrhea, abdominal cramping, wheezing and heart palpitations. I believe Novartis must take a leading role in changing this situation and logically stands to benefit if the restrictions are changed. However, I have not seen any position papers or statements from Novartis promoting a solution for carcinoid patients on Medicare who receive Sandostatin LAR.

Carcinoid patients under private insurance are concerned they also may face restrictions on the amount of Sandostatin LAR their policies will cover because private insurance generally follows Medicare guidelines.

If Novartis is working to remedy the Medicare dosing restrictions, I would like very much to know about it. I will be happy to display your response on my blog and will post your reply to the most popular Internet carcinoid site with more than 600 members, CARCINOID@LISTSERV.ACOR.ORG

Lucy Wiley
Wimberley, Texas
lucysnoidblog.blogspot.com

Inspirational letter of Mar. 13 from Gary Smith

Hi all,
With the decision by Medicare to cut many of us off from our therapy we so need, I would ask the question. "Are we objects or are we agents?" I will pre-apologize for this posting. There are some who will be offended by what I write, and I'm really sorry if you feel that way or if I've offended you. If someone can logically poke holes in my statements, please communicate with me as I'd be glad to hear other points of view.

What do I mean by this? An object is something inert that lets anything and everything happen to them. On the other hand, and agent is someone that uses movement and action to represent a desired outcome. I think over the years we have all (and I include myself) become more like objects and think we cannot make a difference in the world. I had a wise person teach me this concept a few months ago, and I've decided I'm no longer going to be an object.

And so here we are with Medicare. If one follows a logical progression, one could come to the conclusion that since Medicare is now using the insert required by the FDA to hold back our treatments, how soon do you think it will be before the Veteran's Administration starts using this as a reason to not allow for more than 1 shot per month. From there, what will then hold back the insurance companies from using this as the reason to deny your coverage for the 2 shots you might need every 2 weeks or every month. When you go to complain or file for review, there will be a person sitting behind a desk with the Medicare policy and pointing to that as the reason.

Jan put forth an idea of picking out a day to have everyone call in and write to their representatives. I've already written numerous times regarding this issue, but I think she's right that just a few voices are not going to resonate in Washington. I don't know what the "tipping point" might be for this, but it might just be the number of folks who are on this list who decide we need to stop this in it's tracks and insure we do not have anyone standing in between us and our experts. We should not have anyone have to beg for the treatments for us to live a somewhat normal life, I know I do not want to return to the days of 40 bowl movements - for me that was a pure living hell.

Perhaps on this day, you can think about whether or not you are going to allow things to happen to you, or if you are going to perhaps join arms in solidarity with us and protest this great injustice. The more noise we make, the more likely we are to get attention. I've seen many people on this list written about in the media, can you call whomever interviewed you and tell them about this situation? Does anyone else know anyone in the media? Can we get both the Carcinoid web sites to jointly write a press release? Can we get the NETS group to do the same? What can we do to gain attention, bad press, since Washington seems to run by polling - the more visible this becomes the more action we are going to see. Can we get the "specialists" to release a press release stating why this is a bad move on Medicare's part?

During the next few days I will be attempting to write to the web sites and NET groups, maybe other voices might help as well. Sending our story to local newspapers might result in an article. Anyone aware of any non-profit who might assist with this?

Okay, I'll shut up. But please, if you don't want to show up for your shot and find out you are on the hook for thousands of dollars, we need to join forces and reverse this situation now.

Gary in MIchigan.

Letter to Novartis

2011-03-14T17:14:00.000-07:00

The Patients' Protection and Affordable Care Act - why it can't be dismantled

2011-03-07T17:54:00.000-08:00

The Right to Health Care - Who Decides?

One of the best accounts of why "Obamacare" is our last chance at realistic health insurance reform can again be found at jopm.org

Writing for the Journal of Participatory Medicine, Kathleen McCaffrey Friedman traces the issue back to 1963, when Kenneth Arrow, later a Nobel Laureate, explained why health care can't be bought and insured like any other commodity.

No other country pays as much for health care or is subjected to as much advertising and corporate control. There simply is no way to justify why a corporation's interests should come before anyone's ability to obtain and thrive from proper health care. But powerful forces are exploiting every possible angle in their attempt to dismantle PPACA and protect their own interests.

If they succeed, it will not be long before the United States becomes a place where only the wealthy can obtain ANY kind of health care. Emergency rooms will become the dominion of the well-insured and those who can't afford the exorbitant charges will simply be left to get whatever care they can. Think: developing country where even a cast for a broken arm is a luxury. You don't think that's possible here?

The author, Friedman, is an aplastic anemia patient as well as a writer and editor. Since her diagnosis four years ago with a bone marrow failure disease, she has become increasingly focused on the importance of understanding and removing national policy obstacles to enable our medical experts and health care system to reach their full potential of treatment and cure, and to free patients to participate in a health care environment protected, supported, and nurtured by national policy.

How would you ration care?
During a conversation recently, someone asked me that question. There followed comments about people who don't "take care of themselves," and the contrast between those who "contribute" to society versus those who are elderly, uneducated or evil-doers. The aim is to marginalize anyone who can't afford to pay for health insurance or health care as it stands now in the US.

This is a common tactic in political systems desperate to maintain the status quo for those with the most status. Make a certain number of folks "unworthy" and therefore not deserving of whatever goods are being handed out. The Tea Party and other Far-Right groups are constantly crying about "having to pay for somebody else's health care." What about paying for their own? In a few years, without some kind of drastic change, only 10 percent of the nation will be able to do that.

Clearly, the issue of excluding health care from the "free market" is something that must be done if all are to be treated fairly. Unfortunately, there is too little focus on bringing the cost of health care into line with reality. Any attempt to control prices draws venomous retorts of "anti-business," or "against the Constitution."

Somehow, we must manage to do both: bring down costs and make health care available and affordable for every one in the US. I believe it is a Constitutional right, one of the fundamentals of our nation. We must cease finding ways to cut others out of the herd. The "un-rich" deserve decent treatment and they are not working those low-paying jobs because they made bad decisions. Let's just get down from the high horse and work toward resolutions, not exclusions.

Not feeling empowered at the doctor's office

2011-03-02T20:04:00.000-08:00

If you remember to ask all the pertinent questions of every health professional you encounter and always leave the office confident you're thoroughly informed about your condition and your options - read no further. You've evolved to a higher state and may be from another planet.

For the rest of us, this post from the Journal of Participatory Medicine will flash like a laser to your innermost being. We've all been there and can learn from the recent efforts to empower patients. You can find out more at jopm.org

Home A Participatory Medicine Journey

A Participatory Medicine Journey

Kathy Kastner | Commentary | Vol. 3, 2011 | February 15, 2011

Abstract

Keywords: Participatory medicine, patient empowerment, patient-physician communication.
Citation: Kastner K. A participatory medicine journey. J Participat Med. 2011 Feb 15; 3:e9.
Published: February 15, 2011.
Competing Interests: The author has declared that no competing interests exist.

My journey toward participation: It was supposed to be just a routine ultrasound.
The technician came back with a doctor. Doc took a look and to the tech said, “Very thorough. Yes, I see calcifications.” Calcifications: Same word I heard in the context of a breast cancer diagnosis a decade before. Then Doc asked me, “Have you ever been involved in a trauma episode?” I was immediately flooded with the emotions of a recent anniversary which was indeed very traumatic. As I scrambled to focus on the doc’s meaning, he tried a different word, one that I understood right away. “Have you been injured?” “No,” I said.
I then summoned my courage: “What, may I ask, are you seeing?” At the same time, I was asking myself, “Why am I asking permission?” I realize it was because I was suspended in a familiar relationship pattern that thinks of the doctor as “Lord and Master,” and me as “just a peon patient.” Doc’s the one who’s supposed to know and take care of me; I just have to sit back and relax. Indeed, the Doc’s tone was reassuring: “A mass. Probably just a [what I heard was something like] hemoghrbled grmuonp. Nothing to worry about, but I’d like to get an MRI just to make sure.” One part of me wanted to believe the doc. Leave it in his capable hands and everything will be taken care of. And yet, whatever it was, it was suspicious enough to warrant an MRI.
I asked my next question which I knew to be too stupid for words even as the words issued from my mouth. That’s because it wasn’t the question I wanted to ask. What I asked was, “Will I be having an MRI today?” Stupid question because I know the answer and the Doc knew it to be a ridiculous question. He laughed. “Are you kidding? There’s a waiting list.”
What I really wanted to ask was: “Can you write down what you think it is?” I didn’t ask because the paternalistic pattern had robbed me of my courage. By asking, I might be labeled one of “those” annoying patients whose information-gathering was a waste of his time. Perhaps my asking could affect my place on the MRI waiting list.
Left alone to get dressed–as I put my robe in the robe-bag and put on my coat–I was all the while telling myself to “get the info while you’re still here, because it’s going to be such a rigmarole getting it later.” I scanned the line of patients in the waiting area. Not a health care professional in sight. I left without asking, knowing that, at my followup in a month, I would then get results and ask for a copy of the report, making sure to have them point out anything that needed to be highlighted.
Upon reflection, my takeaway: It can be hard to be a vigilant participatory patient. It can be fraught with emotions and fear of repercussion. Upon further reflection: It’s harder to be in the dark, googling everything that sounds like what I heard.
The result of the experience and reflection: Self-growth. Next time, my questions won’t require courage. They’ll be driven by the confidence that comes with self-knowledge. I’ll make sure I get what I need to know.
Now I’ll try to track down those words before the followup appointment and before the MRI. It’ll give me time to learn, absorb, and weigh options. Another step in my participatory journey.

Copyright: © 2011 Kathy Kastner. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.