I am in remission after stem cell transplant but I was prescribed Revlimid as maintenance therapy. I have to take it until relapse. What is your experience with this medication.
I was on Revlimid 10 mg daily for maintenance and it really helped to lower my M-Protein down close to a complete response. After 11 months, I developed an allergic response which caused me to break out in a full body rash and to swell up. I was taken off Revlimid last August and remain drug free. I am still getting my blood checked monthly and if the M-Protein goes up I will try again. I didn't have any other side effects from Revlimid to speak of. My Specialist said that I could expect to have about 80% quality of life on it but I would say up until the rash, my quality of life was more like 90%. I believe each patients experience with Revlimid is different. The bottom line is if Revlimid keeps the MM in check and doesn't make your quality of life too difficult then it is a good idea to stay on it.
Get a clonoSEQ test - preferably from a Bone Marrow Biopsy. If you’re Negative at 10 -6 (no cancer per million cells), lookup the MRD-SURE Report (web search) and discuss with your Doc about being on Monitoring without any MM Meds. My Story @A MyMyelomaTeam Member has a link to a video by Dr Costa where he explains the benefits of being off All MM Meds if you’re 10 -6 Negative. Secondary cancers is one of many reasons to be get off All MM Meds, if you qualify. Avoiding Jaw bone death (has happened to many on this forum) is another. There’s also references at my Story as to the benefits of C3 Curcumin. See the link to the New NIH Study released this year about C3 Curcumin.
In many cases, the practices of the “standard of care” are keeping people on MM Meds far too long. New Case Studies released just this year are proving Less is Best, if you’re in Complete Remission at 10 -6. This year, there are posts of More and More People that are Transitioning to just Monitoring at their Doctor’s suggestion.
I am also in remission with Revlimid as maintenance. I get bone strengthener every three months and have a pet scan once a year. I did after 2 years started getting diarrhea bad so I started taking Colestipol 1gm tablet three twice a day and it stopped it right away. I have been feeling good. Hope you do too!
I now take revlamid with rice pudding.. the diarrhea stopped.
18allyah, There are people on this site that can give you associations and the company itself that can help you with that when they read your post. Stay
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