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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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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!!
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!
1st time post-Diagnosed in December 2019 at age 63, revlimid, velcade, steroid worked to get numbers down until stem cell transplant (delayed because of covid)at mayo in Rochester Mn. July 2020. Revelimid work great for 6 months of maintenance then rash came on so switched me to Velcade for rest of maintenance. Lasted 2 yrs. without any drugs and in March 2025 it came back so back at it. Basically Dex, Kyprolis, Darzalex Faspro weekly. Numbers look great after 15 weeks hoping for maintenance soon. We’re in Iowa 6 months then New Smyrna Beach Fl for 6…lucky to enjoy the outdoors year around. I’ve read people with this cancer have one thing in common-Bad luck.
Good luck and take care.
Thank you @ rjsmtz.
May I ask if you had high risk MM and how long did you receive maintenance therapy ?
Thank you for sharing. I have the 17p deletion and I am always interested in hearing how other high risk patients do with treatment.
Hi @rjsmtz. Wanted to officially welcome you to Connect. I see you’ve been a member since last year and this is your first time posting! Happy to see you here!
Thank you for sharing your experience with MM, and having a ASCT which kept you in remission for several years. It’s encouraging to see that your labs are looking good again with your current treatment. Did your doctor suggest another ASCT or will you be able to just be on a maintenance med again such as Velcade?
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1 ReactionI have MM and had a stem cell transplant in January 2025. I am on maintenance of revlimid 10mg and velcade. I've had minimal side affects. Neuropathy in my feet and some eye issues. But my results show zero myeloma cells in my bone marrow. My hematologist/oncologist at Mayo in Rochester said it's the best you can get. I get a brain MRI again in September to check the lesions from MM. I'm not sure how high risk I was. I didn't really want to know!
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1 ReactionEveryone’s comments are very helpful to me. My husband has multiple myeloma. He will be having a stem cell transplant in October at the MD Anderson Cancer Center in Houston. He has had what he feels are intolerable side effects from the various chemo drugs he’s been given since his diagnosis. The most recent combination has been kyprolis, cytaxan, and dexamethasone. The kyprolis caused hallucinations. The oncologist feels the dexamethasone is causing it, but my husband has been on dexamethasone with no problems previously. Does anyone have insight on this problem?