Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.
Hi, I'm just over a year into treatment. Had Velcade and then a stem cell transplant that hasn't made any difference.
Long story short, and I know everybody is different, I was wondering if anybody got positive results, in so far as keeping their multiple myeloma in check, through thalidomide maintenance.
Paul - I was given thalidomide soon after diagnosis by a local oncologist, but could not tolerate the 25 mg dose. Severe rash. Went to the University of Arkansas for Medical Sciences (UAMS), had a stem cell transplant, and was placed on Revlimid, Velcade, and dex. That was 3 years ago and I have been on the same treatment. All numbers are in normal range and when I go back next month I expect to be taken off all meds!
I feel very fortunate for the treatment and feel like UAMS saved my life
About 2 years after my stem cell transplant, I went on thalidomide maintenance for about 2 years at 50 mg/day. For about a 1.5 years of that, dex was included at 10 mg dosage (that dosage at my request).
After that, I suggested no dex and remained on thalidomide only for another 6 months. I stopped after 6 months for a break because of the drowsiness and some peripheral neuropathy in my feet and legs (both major known side effects).
About 5 months later, because of light chain increase, I went on Revlimid maintenance (5 mg) without dex. I have been on that regimen now for about 2 years with reasonable control.
I am a believer in minimum dosage for best quality of life. These low dosages may not work for everyone.