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Maintenance Therapy After Stem Cell Transplant
A MyMyelomaTeam Member asked a question 💭

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.

posted March 18, 2019
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A MyMyelomaTeam Member

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.

posted March 18, 2019
A MyMyelomaTeam Member

I felt terrible while taking Revlimid. I had constant nausea and the diarrhea was constant. I could barely leave the house. Fortunately when I went into remission my Oncologist discontinued it. I have sustained remission for 4 yrs and am currently off all medication referable to MM.
Gail❣️

posted October 31, 2023
A MyMyelomaTeam Member

Barbara3, the sct will be okay and hopefully put you in remission. It did take me about three months to get any strength back but it does come back.
The hospital food is horrible but you won't feel like eating much. See if your family can bring you fresh food from home. I found hospital food too sugary and salty.
You do what you have to do. It is only an inconvenience for a short period of time that will add time to this sweet life.
Best of luck. I thought alot about swimming and being in water while I was going through the process. Wading in beautiful cool brooks. This was part of my childhood. Just think about good things while your going through it. It is not a painful process just tiring.

posted July 21, 2023
A MyMyelomaTeam Member

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.

posted December 11, 2022
A MyMyelomaTeam Member

My bone pain is so much different than the low back SI joint and sciatica. Both of those are exasperated by too much sitting or the wrong excercise. But my excruciating bone pain doesn't respond to opiods, acetaminophen, or ibuprofen. My Mayo clinic doctor has me take Claritin, it's believed that bone pain is caused by a type of hystemine so something like Claritin settles it down along with a heating pad. Hope this info helps.

posted February 11, 2020

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