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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Revlimid maintenance doubles life expectancies?

by Stann on Fri Oct 18, 2013 12:44 am

Snip,
I'm not sure why you're so sure maintenance Revlimid is not a good idea in general.
If you go to the link referenced by Beacon in post above this one, it looks to me like studies show maintenance Revlimid is a good path for most of us.
I don't know for sure, but I think if you tolerate low dose maintenance Revlimid very well, then most docs would recommend a two year maintenance. And some would recommend staying on it longer.
After 2 years post transplant, I cut back to 10 mg every other day. And plan to keep it up for another year or longer, depending on newer studies.
I wonder what percent of multiple myeloma docs support Revlimid maintenance?

Stann

Re: Revlimid maintenance doubles life expectancies?

by darnold on Fri Oct 18, 2013 6:03 pm

Hi everyone. I had a SCT in the winter of 2009-2010. I was on Revlimid as a maintenance drug until this past January. In June of 2012, I had a small M-spike. It is creeping up, very very slowly, so by January of this year, my oncologist took me off of Revlimid and now is just watching. So far, so good. I feel good -- other than fatigue -- my red and white blood counts are decent, and the M-spike creep continues to be very slow. So, who knows? Maybe I didn't need to be on Revlimid at all, or maybe it helped for a while. In any event, if my M-spike starts to get aggressive, I'll go back on Revlimid or one of the other drugs.

Dana

darnold
Name: Dana Arnold
Who do you know with myeloma?: self
When were you/they diagnosed?: May 2009
Age at diagnosis: 52

Re: Revlimid maintenance doubles life expectancies?

by Pjorg45 on Wed Oct 23, 2013 9:51 am

I understand the points that are made with regard to the apparent benefits to progression free time. What seems to be missing from this discussion is the more detailed understanding of the study and if they account for the different variations in types of Myeloma, risk profiles,chromosomal abnormalities, current state of remission, and staging at diagnosis. As we are learning, we all have a different variation of these characteristics. Has anyone actually read the studies and or looked at the raw data to see how these variations were accounted for? If the study participants were all high risk patients then the benefits are clear. If the study participants were an evenly distributed across the range of variations then it would seem that we need to look at our particular situation and see how that fared in the studies results. I am also curious to see if the studies tried different dosing schedules such as once weekly, twice weekly, etc. Would like more detail to understand better if is right for my situation.
:D Paul Jorgensen
Annapolis MD

Pjorg45
Name: Paul Jorgensen
When were you/they diagnosed?: May 1013
Age at diagnosis: 68

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