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Ultra-high-risk multiple myeloma: My post-transplant update
Hi All,
I wanted to let people know, in case they are searching for support with ultra high risk multiple myeloma (which I have, three mutations), about how my case is going so far.
I had my ASCT in mid-February at Johns Hopkins. It all went very well, I didn't have a hard time with symptoms and side effects and I was only there for 3 weeks, before being sent home with fabulous blood counts. I have continued to get stronger steadily and I'm feeling perfectly normal except for the fact that my old strength hasn't yet returned.
I had all the re-staging tests done, and I didn't look at the results (that's just how I deal with the fear and stress). I had my follow-up appointment at Hopkins on Monday, with my brilliant but scary PhD/MD oncologist. He told me that my results are the best possible - negative MRD, complete remission. He started by showing me his computer screen, which he had enlarged my biopsy results, showing that I have 0 cancer cells in a sample of almost 3 million cells.
He did share that he was not expecting to see those results, and that he was very surprised. My husband and I were obviously very surprised! He has ordered for me to start maintenance chemo in 2 weeks, which will be Pomalyst with Kyprolis/isatuximab every two weeks. He told me he had to extrapolate from many trials, etc to design the maintenance therapy since he wasn't seeing too many cases like mine, and he wants to go as aggressive as possible to keep me in remission.
I feel very very lucky to have done well with the treatments so far. Of course I'm lucky to get care at Hopkins. The way I see it, my body got me into this mess, and it sure as hell better do its best for me right now.
All the best,
Meg
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Hello! I am posting here for the 1st time.
Totally agree with @meg1685 . I am also a high risk MM patient. I was diagnosed in Nov 2024 and received 2 cycles of Dara-Revelimid-Velcade-Dex when I had the DRESS ( drug related eosinophilia and systemic symptoms) It started as a skin rash on my back and abdomen and progressed to my face /arms / legs with a lot of facial swelling and hypotension. I ended up in the ICU but luckily recovered quickly. This was presumed to be due to Rev . I then received Dara-velcade -Dex for 2 more cycles. Pet scan was neg after that and also I was MRD neg.
I went to Mayo Clinic in Jacksonville,Florida ( I live in St. Augustine) for my ASCT in March 2025. Initially did well , then did have quite a bit of diarrhea, minimal mouth sores( ice chips really help) a lot of fatigue. Now I am past Day 100 and repeat tests are still negative ! I am slowly getting stronger ; have some neuropathy in feet and chest wall.
My oncologist is hesitant to give me Rev again for maintenance as there is a chance of my getting DRESS again. He wants to give only Dara each month. My ASCT DR recommends trying Rev 10 mg and monitor for any signs of rash , etc. Because of the high risk he wants me on 2 drugs.
Has anyone else had a similar experience and what maintenance therapy did they get? Would be interested in finding out and getting some advice .
Thank you for this platform!
Well, it might be a bit more nerdy, but if you’re able to be a full-time musician, that’s a lot cooler overall than me!!
Well, I hope for continued health for you! Thanks for all the good advice.
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1 ReactionThe whole thing was much easier than I thought it was going to be. Your imagination is almost always worse than the reality!
That's WAY cooler than me. I am an oboe player, but extra nerdy - I don't play the modern oboe, just historical period oboes in the many baroque orchestras across the US. I do a lot of traveling, which is already proving to be quite tricky with germ avoidance and the start of my maintenance chemo!
Hi - I’m glad it helped. And since you’ve said you’re relatively healthy, I want you to know that although I was healthy for me, I was 60 and had 25 years lupus SLE and a history of HLH (rare and serious immune blood disorder) both of which they were concerned might flare up during transplant. But that didn’t happen and all the doctors say I’ve been much better than average with my post transplant symptoms. And I’ve had no GVHD 6 months out (although if you’re using your own stem cells then GVHD is not a concern). I’m sharing this because if it could happen to me then it is even more likely to happen for you. All my best to you. 😀
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2 ReactionsThanks Debbie, I really appreciate hearing your experience. It does help to know that some people had a relatively easier time than the stories I’ve read and heard. Hopefully since I’m otherwise healthy, I’ll get through it as well as you did!
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1 ReactionHi - I can understand how it’s hard to rationalize having the transplant when you feel well; I was in a similar position with Eosinophilic leukemia (was on jakifi with only 1-2% cancer cells and feeling really good). But we decided to go forward with allogeneic transplant in nov 2024 and I’m glad we did because I’ve done really well and it had to be done at some point. The doctors say you do best when you feel well and your disease burden is low or in remission. I was really scared and anxious before transplant because they have to tell you all the terrible side effects you may have, But I only had nausea bad for about 7 days with some nausea for about 3 weeks; but no mouth sores or diarrhea. The fatigue is noticeable but not terrible. At almost 6 months out I do think I did the right thing for me because we knew the transplant had to be done and we did it on our terms when I was feeling well. And for what it’s worth, once I was admitted for the transplant the anxiety disappeared and I felt very cared for in the hospital - hopefully this will happen for you too. I wish you all the best. - Debbie
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5 ReactionsI was a singer in a band during college and my 20s and wrote original funk music. I now sometimes play in a cover band with my friends. What about you?
What do you play/sing?