Question about CR and need for continued treatment - part 2

I do not think there are any firm rules on this and various doctors (and patients) will have their own philosophies. Also, there are many types of MM so a doctor may feel that one type warrants some maintenance while another type is so indolent that the patient can maybe do better with no treatment until it returns. I think it is always a possibility for the patient to decline treatment for a while but the real issue is whether or not that is the best path. Sometimes this issue is far from clear one way or another. Other times (depending on the nature of the MM) the matter is more easily decided.

I think the key thing is how likely the MM is to come roaring back from nothing. Some types of MM have a past history of proliferating very rapidly once they appear. Other types will have a history of only very slow proliferation. One is more likely to want some sort of maintenance treatment if the MM is the fast accelerating kind. The other consideration is the nature of the proposed maintenance treatment and how the patient tolerates it. One does not necessarily want to badly lower ones quality of life from something that has discomforting side effects if the benefit is known to be marginal from previous clinical trials. Lastly, with the bisphosphonates like Aredia or Zometa, there may be some chance that the drugs may start to become less effective over time. If so then at least a reduced dosing for maintenance may be better. This issue is still being examined by the researchers.

It definitely can change to a more aggressive form (and sooner or later most likely will) but there is no particular schedule that determines when this will happen. The only thing one can do is to sense what is happening to your body and take frequent blood or urine checks. Remember to check further everything that needs some explanation - even when it seems like a spontaneous change for the better in counts.

I agree that thalidomide is not all that desirable as a maintenance therapy if there is some way to manage without it. If you must continue with thalidomide, try to slowly ramp it down - even if you have to add some low dose maintenance dex to augment it. It might be possible to gradually get down to something like 50 mg of thalidomide every other day. One could consider also taking a low maintenance dose of dex of maybe 4 mg per day or whatever the doctor recommends. I would not discount Biaxin as a maintenance drug either if used in combination with minimal thalidomide and/or dex. Then there is always the idea of using a very low daily dose of cytoxan instead of thalidomide and maybe boosting it with some minimal dex. If you gradually (and very carefully with lots of testing) slowly reduce the maintenance drug(s) maybe you could feel comfortable being drug free at some point. But be very careful to only drop doses after waiting a bit since the last dose drop to see what the Mm does.

Very best,

Bob Meyer