I have found over the years oncologists have been divided over maintenance therapy for multiple myeloma. Some feel as soon as the cancer is under control, stop. That way, when the cancer comes back, there is a chance the original chemotherapy may work again. The theory: Like other cancers, after it is exposed long enough to any therapy, the myeloma adapts and returns. On the other hand, some oncologists believe it is best to keep the myeloma “down” by using maintenance therapy and continuing it, often in lower doses, until the drug begins to lose effectiveness. Trouble is, there is very little data to support either position. These physicians are just going by their “gut” – their instincts, their opinions. Worse, oncologists are often hesitant to give an opinion at all, leaving the difficult decision to an emotionally and intellectually ill prepared patient. Ultimately, most revert to the standard fall back position – transplant. When in doubt, undergo a stem cell transplant. This has always surprised me. Transplants can be effective. They can go well and, other than the three or four months a patient loses from their life (being unable to work and often staying away from home…Oh yes, and don’t forget the expense!) Transplants are a proven, standard therapy in myeloma. But it is an invasive procedure. There can be serious side effects. And sometimes they just don’t work. So why the rush to transplant? My theory: Ask a surgeon what to do and they will most likely suggest surgery. No surprise there! Surgeons see the world a certain way, pro-actively. I view the transplant issue in the same way. Like surgeons, oncologists are likely to suggest the most aggressive therapy possible.
So what did Dr. Durie suggest in my situation? He already shared with me he felt a transplant wasn’t necessary in my case, a good start. What about maintenance vs stopping therapy to watch and wait? Here, Dr. Durie was assertive. “Pat, several new studies will be released soon with definitive data confirming it is best to continue a therapy (in my case, Revlimid) as long as it is working. Keep the cancer in the box!” Dr. Durie emphasised. Apparently, by keeping the myeloma down, it is less able to adapt to any given therapy, making it different than solid tumor type cancers like liver, kidney and lung.
“Keep it in the box.” Dr. Durie repeated. “OK, great!” I replied. “But what about dosing? Is 5 mg of Revlimid enough, or should I stay on 10 mg?” Dr. Durie suggested I stay on 10 mg of Revlimid, but go to 14 capsules a week – two weeks on, two weeks off. Then, if my white blood counts start to fall again, switch to 5 mg 21 days and 7 days rest.
I want to take one more day to discuss Dr. Durie’s conclusions about maintenance therapy. I think this is very important for all myeloma patients, whether they get a transplant or not.
Feel good and keep smiling! Pat