Happy Birthday to Me

65 and still alive!

October 25 was a beautiful fall day in Central Texas. My loving husband provided roses, a pumpkin to carve and a card with a hunky guy on it.

Every day is a celebration when you have cancer.

Oddly, that's not my worst problem right now.

You can't see it, but the vertebrae in my neck are slowly squeezing the daylights out of my spinal cord. I was in agony for about three weeks despite all the usual remedies like traction, drugs, acupuncture, massage, ice, heat and more drugs.

Finally, I went to a good orthopedic doctor named Brent Adcox, who graduated from Texas Tech in Lubbock. (Can't get more Texas than that.) He said, "you gotta get this fixed or pretty soon, you won't be able to pick your nose." He sent me to San Antonio for an "epidural" which is kind of like having the "Tingler" in your spine, if you recall that ancient horror flick. Dr. Maged Mina, the guy who performed the procedure, couldn't have been nicer. But he had to use local anesthetic because I drove to the hospital alone and couldn't scare up anyone to drive me home.

Usually, they knock you clean out. Now I know why.

Injecting the local anesthetic was the worst part. Oooouch! But after that, snaking a catheter up my spine between my shoulder blades was weird but not especially painful. I could feel the pressure of something tunneling up to my neck and out the nerve to my left shoulder. Now and then, the catheter would touch my spinal cord and cause me to feel like I was getting the electric chair. But it wasn't particularly painful. My body jumped involuntarily like ... well, like I was being electrocuted.

Immediately, the pain stopped but the numbness in my left thumb and forefinger is still evident. I can live with that until I get back from Basel. I fly out of Austin, TX for Switzerland on Nov. 16 for round two of the isotope therapy. The first round was in Germany, this past July but I don't want to go back there for lots of reasons. Email me and we'll talk.

Will things be better in Basel?

Will it be cold? Undoubtedly. I was especially happy to get electric socks for my birthday, along with heavy-duty thermal underwear and gloves. I'm ready. Determined to keep everything in a single back pack, I won't be doing much blogging until I return. But watch this space for updates.

Right now, I feel pretty good. I rarely even think about carcinoid, believe it or not. Maybe the first round of 177-Lutetium knocked the beast to its knees. I hope so. I'd rather NOT go all the way to Switzerland to find out I don't need further treatment. On the other hand - who could ask for better news?

Genetic Info Protected

You may hear about GINA

The Genetic Information Nondiscrimination Act of 2008 (GINA) will prevent health insurers - or anybody else - from using your own genes against you. GINA is a proposed rule that will undoubtedly be enacted. The rule has broad support from several sectors of the government including Labor.

It will prevent health insurance companies from denying coverage because of genetic information you may or may not even realize has been collected. You know all the paperwork with microscopic type you MUST sign if you want treatment, surgery, lab tests, etc.? Sure, you're going to read through every word while the admissions tech drums his/her fingers.

Beware 8-point type
Many times, there is hidden in the fine print the right to retain and use anything removed from your body: tissue, blood, ear wax. If you have surgery or even lab tests at a major research center, it is almost certain you signed something that provided the institution with the right to perform tests, including genetic factors, on anything the pathology lab receives.

Usually, these facilities are very cautious about individual records because of HIPPA. But records can be obtained by insurance companies. They do it all the time to determine pre-existing conditions, especially if there's a lawsuit involved. Sometimes genetic information inadvertently gets passed on with other medical information in the form of claims, second opinions, even appeals, etc.

Do you really want to know?
It doesn't take much imagination to see how genetic facts might be misused by prospective employers, even dating services! What about life insurance sales sellers? Think you could get a cancer insurance policy after your genes point to future disease?

More folks are getting their own genetic testing these days, although carcinoid is not always one of the diseases the tests can pinpoint. At the NOLA conference, we heard about a $3,500 profile that shows whether you MIGHT have the genetic wherewithal to develop certain diseases or if you already have them.

This opens the "do you really want to know?" discussion. In the absence of a cure, would an otherwise healthy person want to know he or she might develop cancer? Alzheimer's? On the other hand, if you've dealt with undiagnosed symptoms for years, it might short-list the possibilities. It's hard enough getting a doctor to order bio marker - even if you have every symptom of NETs in the ISI book.

Why not GINA?
I don't know about you but I'd never heard the word "carcinoid" until my primary was found. Then, I learned not many doctors - oncologists even - knew much about the disease. I'd gladly have submitted to any test to stop so much pain. But if I'd had my genes tested early on, I might have been deemed "un-insurable" by now or put into a high risk pool.

Why wouldn't we want our genetic details protected? Who gets genetic information and what they do with it should be closely guarded, never exploited. That's what GINA is all about.

Big D and Other Nutrition Problems

These comments have been edited.
From the NOLA 09 Conference - Leigh Ann Burns, MS, LDN/RD, CNSD
Oncology Nutritionist/LSU Cancer Prevention

She’s been a nutrition consultant for more than 20 years. In her opinon, carcinoid is different from other kinds of cancer, especially when it comes to the Big D – diarrhea – which most of us deal with.
Burns says consider where tumor bulk is (foregut, midgut, hindgut, etc.) and your specific symptoms, whether they are diarrhea, skin problems, wheezing or joint pain.
Keep a food and symptom diary for a while before consulting a dietician. They always wonder about what goes in and how it comes out.

Diarrhea – Basic Mechanics
* Osmotiory - how much water passes through the gut membrane.
* Secretroy - what is being secreted by the tumor that makes diarrhea happen.
* Decreased contact time and surface - short gut, motility.
Probably a combination of all these factors can cause diarrhea. Sometimes the intestinal tract has been flattened by decreased contact time so the process of digestion gets slower.
Many times all three conditions contribute.

Osmotic – absorption of nutrients may be hampered by:
* lactose intolerance
* tube feeding
* sorbitol and manitol – these artificial sweeteners often are in diabetic foods and are known to cause diarrhea.
* epsom salts, used to prep for surgery
* antacids – especially if over used. Many are magnesium based and may also be in GI prep for surgery.
Quit giving/taking these things and sometimes you can stop osmotic diarrhea.

Secretory diarrhea is harder to stop. Intestinal water exceeds absorption before it leaves the colon. Causes watery stool.
Bacterial toxins are present whether you’ve eaten or not. Must test PH of stomach and it can show if you have this.
Drugs may also cause it, especially those for asthma, antidepressants and cardiac meds.
Other causes for diarrhea – heavy metals, organic toxins, accidentally ingested mushroom toxins and caffeine with or without sugary snacks.

Secretory diarhhea especially characteristic of:
VIP vasoactive intestinal peptide
Midgut due to gastrin and other markers
Short bowel if you’ve been resected
Inflammatory bowel (probably your dx before the correct one)
Gluten intolerance (also known celiac sprue) symptoms also shared by NETs
Pancreatic insufficiency for whatever reason – can be due to tumor or partial removal.
Intestinal surgery – may cause narrowing of the gut, short gut
Gallbladder removal – things are never the same, afterwar
Bacterial overgrowth – this condition often is underestimated
Bile acid - related colitis

Drug induced (somatistatin analogs)
Burns spends most of her time dealing with this aspect of diarrhea.

Intake refers to carbs, proteins and fats. There may be too much of one or they may not be digested properly. Outgo is formed stools vs. runny stools, dark brown vs pale colored or fatty stools that float. A strong odor is associated with carcinoid stools. (understatment!)

Very few pts Burns sees have a normal gastro-intestinal tract.
Digestion starts much sooner than you think. It actually begins when you see and smell food, which causes acid to form in stomach and saliva in the mouth. Some digestion occurs in the mouth when you chew the food.

When we take out the gallbladder, we’re going to have seepage of bile into the small intestine. Same with the pancreas. If we stop the normal release of enzymes, we will see reduced enzymes in small intestine. This will affect how food broken down.

Meats need more acid. So when there’s not enough acid in the stomach, digestion is slowed in the stomach. By the time food gets to the ileum, it’s best to have all the bile acids absorbed. otherwise bile may enter the cecum, causing damage to large intestine. This is what causes lots of diarrhea in many cases.

You need to know the transit time. It should take at least 30-50 minutes after eating for stool to form.

Some tips for decreasing those smelly floaties
If possible, eliminate caffeine or anything that stimulates GI tract, thus affecting absorption. Headache remedies and other OTC meds can be a problem. Try to use the smallest amount possible and stay close to home. If you must be outside of a controlled situation (travel?) it might be best to avoid the medication altogether.

Cut down on fructose and sucrose, sweeteners found in apple, pear, soft drinks, even sugar-free and milk products. Yoghurt and “cured” milk products are not as bad. Increased motility is caused by activity, stress, foods like concentrated sweets, mix of solids and liquids, extreme hot and cold, fiber types. Increased motility equals diarrhea for most folks.

What can you take for diarrhea?
Anti-diarrhea meds work by slowing down the GI tract to improve water absorption. Immodium, codiene and opium, cholestyramine, pancreatic enzymes, probiotics, all are possible medications to decrease the amount of water flowing to quickly into the colon.
All work in some cases but they only treat symptoms and not the underlying cause of diarrhea.

A “dumping syndrome” diet can be used for short or long time.

Cholestyramine – is prescribed when bile salts may be problem. It also has cholesterol-lowering properties. Cholestyramine can carry bile salts out of the tract before food reaches colon. Beware - if you are taking cholesterol-lowering drugs, you might have to separate the two medications at least by at least two hours or more to avoid interference.

Why steatorrhea?
AKA “the floaties” – large volumes of foul-smelling, greasy stools. Often pale.
They indicate you are not getting enough lipase to break down the amount of fat you’re taking in. You need additional enzymes to aid in digesting fat. Eat less fat.

Protein is one of the harder energy sources to break down. Many ‘noids take pancreatic enzymes when they eat – a meal or even a snack. Since folks with carcinoid need more frequent meals, they need to take the enzymes more often.

Generic pancreatic enzymes were taken off the market because they don’t cross over for use in the body. Burns does not give out prescription versions of generic pancreatic enzymes. Be aware that sometimes products change over time.

Top tip for cutting down on fat: use a smaller plate.
Probiotics- these substances restore natural flora in the gut. Unfortunately, they may increase the amount of gas but help lessen diarrhea. Bacterial overgrowth can occur with the syndrome. Probiotics and Flagyl works.

The biggest problem with diarrhea is not the embarrassment, or even the physical discomfort. It is the chronic loss of nutrition. Supplement your diet with proteins and carbs, both of them may be given in powder form. Sometimes it helps to eat solid food first, with no liquid. Then drink your liquid 30 to 45 minutes later.

Q: How does sugar affect liver?
A: Probably sugar is related to malabsoprtion, rather than tumor growth. Sugar does not necessarily promote tumor growth. Anytime your body releases high levels of insulin, you also release insulin growth factor (IGF) which is one of the biomarkers that may affect NETs but there’s no conclusive evidence now that IGF is linked to tumor growth.

Q: Is Aspartame harmful?
A: Aspartame is being researched. High amounts appear to be harmful to some. One packet may not be but a current study shows MS may be adversely affected. Aspartame can cause diarrhea but it’s not as bad as sorbitol.

Q: Could you take probiotics forever?
A: Yes, they have very little potential harm.

Q: Anal problems such as itching, burning. What causes this?
A: Usually from faulty bile salt absorption. Cholestyramine can be useful. If the itching is from leakage or seepage of stool, you may have to change the PH of the bowel.

Stay hydrated – noids need more water than they usually drink and you need to offset the loss of water from diarrhea.

Onalta - official word on when it's coming

Dear 'Noids: I posed several questions to Molecular Insight, developers of Onalta, a 90-Yttrium drug for treating neuroendocrine cancer. As most of us know, 90-Y is of two isotopes used in PRRT, which has the best stats for remission and stable disease AFTER surgery.

Here's the official reply I received Tuesday, Sept. 29,2009, cut and pasted. No editing.

Dear Ms Wiley:



Your recent request for information regarding Onalta 90-Yttrium edotreotide has been given to me; I’d like to provide you with the following responses to your questions:



Q: When will patients in the United States obtain PRRT with Onalta?

A: As you are probably aware, Onalta is an investigational drug still in the clinical trial process in the United States and will not be commercially available until the trials have been completed, and the data summarized in an NDA for FDA review and marketing authorization. In response to a request from FDA for additional data, we are presently working on a plan to provide

these data from new animal and human studies. We recently met with the FDA Division of Medical Imaging and Hematology Products to discuss our proposal for new studies, and received a positive response. When complete, these will form the basis for initiating a clinical trial in the US which will allow treatment of patients with 90Y-edotreotide. We hope that this trial will initiate next year.



Q: …Onalta has not been available in the US although it has been administered in Europe for decades?

A: Onalta was researched in clinical trials in Europe by Novartis in the late 1990’s and early 2000’s. Although their results were encouraging, the research management of Novartis made a strategic decision not to pursue the Yttrium 90 therapy, and opted for deployment of their financial resources for other cancer drugs in their pipeline. At that time they discontinued their trials before completing the full set of studies required for marketing approval. Subsequently the product was in-licensed by our firm and we are pursuing the completion of clinical trials resulting in the complete data package sufficient for licensure. Recently we announced a partnership with a European firm that will result in initiation of a PH 3 trial in Europe, we hope in 2010. As stated above, we hope to initiate a therapeutic trial in the US also in 2010, following submission of our new data to FDA.



Regarding the continuing availability of an Y90 edotreotide product in Europe, which a number of patients like yourself have traveled to Europe to seek, it is important to note that this product, although similar, is not Onalta. Since Novartis discontinued their trials, the various research centers offering this therapy have produced an Y90 edotreotide product in their own radiopharmacies for the purpose of administering therapy under the academic institution’s oversight under the concept of “practice of medicine”.



We cannot comment on the purity or identity of these other Y90 edotreotide products as we are not involved in their manufacture and are not involved in the treatment of these patients. However we can reassure you that we are making progress in the research studies which will result in an Onalta therapeutic clinical trial in the United States for which many patients could be eligible. Plans are underway to provide Onalta for expanded access in european countries, subject to approval by the health authorities of the individual nations, as well as to initiate a PH 3 trial which will provide the data to be the basis of a european marketing application.



I will keep your contact information and notify you as soon as we have additional information regarding clinical trial access to Onalta therapy. Likewise, please fell free to contact me with questions now and in the future.



Sincere best wishes,

James Allen Wachholz



James Allen Wachholz

Vice President Regulatory Affairs and Quality Assurance

Molecular insight Pharmaceuticals

Cambridge MA 02142



office: 617 871 6650

mobile: 857 998 9367

Lutetium comes to America

177-Lutetium will be available to NETs patients IN THE USA before the end of the year, according to Dr. Abe Delpassand of Houston.

Collaboration between Baylor Medical School and Excel Diagnostic* – both in Houston – along with LSU and Erasmus Hospitals of Rotterdam, will get FDA approval to administer this form of PRRT by the end of 2009, announced Delpassand on the final day of the NETs conference in New Orleans.

Rotterdam’s cyclotron recently shut down due to structural problems. The Netherlands branch of Erasmus hospital quit taking new patients from the US in July, funneling clients to other facilities in Germany, Sweden and Switzerland. The shuttered reactor allegedly contributed to a worldwide shortage of therapeutic isotopes, according to news accounts.

Differences between the three remaining purveyors of PRRT are known by doctors and patients in the neuroendocrine cancer community. Both 90-Yttrium and 177-Lutetium are offered by clinics in Basel, Bad Berka and Uppsala, although protocols vary.

Basel’s preference for the stronger isotope, 90-Y is termed “High-Hard” protocol, compared to Bad Berka, Germany’s “long-term/low-dose” approach. Treatment with 90-Y “is being pursued,” said Dr. Thomas O’Dorisio of the University of Iowa.

Onalta, the proprietary form of 90-Y, went into Phase III trials in Europe earlier this year. Skeptics point out several doctors promised they would be approved for 177-Lu beginning three years ago at the Norfolk NETs conference. If Excel’s Investigation of New Drug application - filed in 2007 according to Delpassand - goes through, it will be the first time the highly effective treatment has been offered commercially in the US.

Delpassand urged carcinoid groups to support efforts to secure lutetium in the US. A non-profit group, RITA, has been set up to receive contributions. “Financial help is important,” Delpassand said. Large pharmaceutical companies don’t risk investing in “orphan drugs” to treat a small population with rare disease, he added.

* Radio-Isotope Therapy of America (RITA)

A member of Excel Diagnostic Imaging Clinics, Houston (713) 781-6200

A nuclear medicine clinic in Singapore expects to offer 177-Lu by early 2010.

Dr. Yi-Zarn Wang, Kenner team surgeon, with NETs patients Karen Nelson (left) and Lucy Wiley.

DAY ONE NOLA -- SEPTEMBER 25, 2009

Please come to the next ‘noid conference.

You meet the most caring, informed souls and most have carcinoid or a loved one with the disease. In NOLA, Georgia Beauchemin and others made an organized effort to bring patients together.

An after-dinner mixer had tables for PRRT veterans, pumpers, ACOR, support Day One NOLA Conference groups and other topics of mutual interest.

Experienced ’noids were at each table to discuss or demonstrate for other patients.

Does it hurt to wear the pump? There was a corner for that. People with pumps showed off their mechanical wonders. And the answer is no – it does not hurt to wear or use the pump. It made a huge difference in the way I feel.

The PRRT folks who “graduated” from Rotterdam, Basel and Bad Berka, told what it was like to get treatments and how each place differs from the other. It was a wealth of information in one place.

Faces Matched to Emails
I adore meeting those wise and loving ‘noids I know by email, mostly through that valuable ACOR listserve. We really get down to essential issues in our emails, so to meet in person satisfies curiosity and takes intimacy to a new level.

Quick Notes From Day One
Differences between US and European Staging by Dr. Guido Rindi

On a scale from one to ten-- easy to very technical -- this presentation was 15! I grasped about every seventh sentence.

In a nutshell:
Europeans have a more detailed scale for staging cancers, especially NETs. The US depends mostly on Ki-67 staining and mitotic count. Treatment decisions can be based on physician preferences and intuition. It is really hard when there is no basic rating system; so you go from one doc to the next, each giving you a different pathway to try.

Europe also uses Ki-67 and mitotic count for assessing tumor grades. But they devised a numerical system for predicting tumor behavior. Example: a higher mitotic rate (tumor cells dividing) can boost a grade one tumor to a more active stage – grade two.

Tumors also contain dying (necrotic) cells, which are somewhat ignored in the US for staging purposes. Europe accounts for necrotic AND dividing cells when they come up with a number to classify tumor stages.

In 2004, the European NETs debated whether mitotic count or Ki-67 staining is the best predictor of survival rates. They settled on TNM (tumor-nodes-metastasis) classification, which also places numerical values on such variables as distant metastases, lymph node involvement, along with the traditional Ki-67 and mitotic count. The idea behind the numerical system is to give clinicians a scientific basis for treatment options.

Q: “You say no fine-needle biopsy. Why?”
A: You need large pieces and more cells for accurate assessment. It can be done on preserved tissue, which is very precious stuff. So don’t be disappointed if you can’t get your tumor block to take home. Pathologists need it.

Histology and Mitotic count should be repeated again before surgery.

NOLA NETs 09 The Thursday Night Reception

Dr. Eugene “Pimp Daddy” Woltering in his Zebra Hat danced with me (yes, it’s a wig) to “When the Saints Go Marching In.” You can’t get more New Orleans than that!

What a happy crowd. The table decorations were delightful and the band was rockin.’ See your photo here? Post a comment to identify yourself and I will donate $5 to the Carcinoid Cancer Awareness Network.

The Kenner team is gifted with several fantastic staff members like Pam Ryan, Anne Porter, and Leigh-Anne Burns, to mention a few. They helped with many of the thoughtful details that made this evening so special. Example: the raffle for loads of beautiful and useful items like jewelry, zebra-pattern cuddle blankets, hand-made quilts, artwork and gift certificates, cans of black raspberry powder and just about everything you can imagine in zebra.

Some of the most fantastic things in the gift baskets were made and donated by patients – ‘noids like us. I was sad not to win anything but in a sense, we all are winners.

Tomorrow, the presentations begin at 8 A.M. I’ll blog from every lecture I attend. Wish I could be at all of them but lucky for us, Bill Claxton and crew will have the video of everything to download and watch at your leisure.