“Don’t drug company researchers have an obligation to continue fine-tuning our treatment so that the drugs they develop don’t kill us before the cancer does?”
Clinical trials for Thalomid, Revlimid and Velcade didn’t anticipate this. And don’t get me started about using dex indefinitely. It can’t be good for you to use any corticosteroid for years at a time!
Ten years ago when these drugs were being developed, I don’t think researchers anticipated that they might be used indefinitely, for years at a time. The plan was to use them to knock a patient’s multiple myeloma back, then stop. If and when the myeloma became active again, hopefully that drug would work again, too.
So Phase 1 safety profiles using high doses of any of these drugs were never run longer than a year or two. The toll taken on our bodies while staying on one or more of these drugs indefinitely are still largely unknown.
I’m a perfect example of this. I eat very well, exercise regularly, don’t smoke and don’t have any significant co-morbidities. My blood pressure is perfect. My weight is good. Yet I can’t seem to keep my white counts up high enough to use Revlimid continually. Eventually it wears my body down.
Even before I underwent my auto stem cell transplant last year, Revlimid assaulted my neutrophil (ANC) counts. The good news was Revlimid worked for me. The bad news? After three years, I wasn’t even able to take 5 mg for the standard 21 days on, with 7 days off.
Following my transplant, I’m finding that Revlimid is even harder on me. Once again, the good news is it seems to be working–like my transplant hit a re-set button. But my body doesn’t seem to be able to withstand an ongoing Revlimid maintenance regimen.
I have been neutropenic (when a patient’s ANC count falls below 1.0) several times each of the past two months. And my platelet counts have been knocked-back too, hovering around 100.
I’m getting Velcade sub-q once a week, 4 weeks on and 4 weeks off. That doesn’t seem to be an issue–at least so far. And my doctors both agreed to drop the dex, so that’s not the problem. It’s Revlimid. After a short year, even 10 mg Revlimid is too much for my body to take.
Once upon a time, my white counts could recover after a week off. But no more. Next week my dose has been reduced to 5 mg.
The thing that troubles me most is few in the research/medical field seem concerned about this. Our dear and very persistent friend, researcher Gary Blau, rails against the medical establishment’s resistance to begin using individualized dosing. Without knowing what an optimum dose of Revlimid is for me, how can my doctors even know how much Revlimid I should take–and how often?
I’m afraid that in their haste to develop the next, best novel therapy agent, pharmaceutical companies have little interest in fine-tuning treatment protocols. That’s left up to our physicians–and they’re just guessing!
If myeloma patients are expected to live with our cancer for decades or longer, doesn’t common sense teach us that it’s counter-productive to have our bodies destroyed by the drugs that are designed to save us?
My wife endured a hellish six month long chemotherapy pounding eleven years ago after she was diagnosed with ovarian cancer. It was tough. But at least we had hope that her treatment might cure her, and that she would not be forced to undergo her treatment indefinitely.
Don’t drug company researchers have an obligation to continue fine-tuning our treatment so that the drugs they develop don’t kill us before the cancer does?
But I’m stubborn. In spite of it all, I’m going to try to feel good and keep smiling today! Why don’t you join me? Pat
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