 |
| This could be your T-shirt! |
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.
0 comments:
Post a Comment