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Ultra-high-risk MM 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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Well, I'm not a doctor so I can't really give an opinion on whether you should have this done. My understanding is that relapse is certainly on the horizon for MM patients and that transplant is the way to have a deeper, longer remission. My doctors explained to me that it is part of the most aggressive treatment plan, which I'm totally on board with.
It's not likely that you'd be in isolation for months. I went back to work after 10 weeks, because I was feeling totally up for it. I would have gone back sooner but my job is kind of physical (I'm a musician and performing is pretty intense). I'm masking and using hand sanitizer and I asked other musicians to do the same, and to stay far away from me if they even suspected they were sick, which they were totally glad to do. I can avoid the audiences with no problem, I just basically run backstage and hide out til they're gone!
I totally understand about feeling nervous! I wasn't nervous about anything but mouth sores, but now I'm nervous about germs. I just couldn't stand to pull out of even more concerts after already not working for a year - I need the money! 🙂 And seeing so many friends again is doing me a world of good.
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1 ReactionThank you so much for your advice!! Btw although I’m an attorney for my day job, I’m also a musician!
Thanks again for all the help, and I hope for continued health to you.
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2 ReactionsWhat do you play/sing?
I 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?
Hi - 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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3 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!