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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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Meg, thank you for sharing this fabulous update! I’m thrilled for you that your autologous stem cell transplant for MM went so well and that you’re recovering nicely…a poster ‘child’ for how this is supposed to work. ☺️
It sounds like you have an excellent doctor at the helm to ensure you stay in remission with maintenance chemo. With the Kyprolis/isatuximab be new medication for you?
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1 ReactionThank you, Lori! I hope others out there with high risk MM will be heartened by these results - who knows what is down the road, but I'm glad to have made it past this first huge goal.
I've had Kyprolis/isatuximab before. My first round of chemo was revlimid/velcade/isatuximab. It didn't quite do the job. I had to have another half-round which was with the Pomalyst/Kyprolis/isatuximab.
I've got to start scheduling the pregnancy tests now - they won't release the Pomalyst until they have two negative tests, 10 days apart - ridiculous for a woman almost 2 years in menopause! But that's another story .... !
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2 ReactionsHi Meg, I am also high risk and am scheduled to have my transplant in 11 days. I’d really be interested in hearing more about your experience with the high-dose chemo. How old are you? I’m 55.
Not sure how to message privately, but I’d really like to pick your brain if you have the time!
Hi @ttjk531, Welcome to Connect. I’m so happy to see you’re already ‘connecting’ with other members who have MM and undergoing the autologous stem cell transplant.
As a new member, there’s a waiting period before you’re able to private message anyone, such as @meg1685. It’s just temporary. Since this amazing forum is all about support, encouragement and offering hope between members, keeping the conversations right out in the open benefits countless others who may be going through a similar diagnosis or treatment.
Feel free to ask any questions you may have about your upcoming ASCT. Are you having to relocate for 6 weeks or so for the procedure?
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1 ReactionThanks! No, I will be in the hospital hopefully for 2.5 weeks and then home.
Hi! I'm also 55. I'm happy to answer questions here in this forum.
When you say high-dose chemo, are you talking about the 2 days of melphalan?
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1 ReactionI was in outpatient housing on the Hopkins campus, rather than in the hospital (that's how they do it at Hopkins, they only admit you if you get an infection or experience other problems). I was there for 23 days. My oncologist (in my regular network, not my Hopkins dr.) told me, before the whole thing started, to prepare for a 2 month stay. But as soon as I got there, the nurses were saying 3-4 weeks.
Where do you live? I live in northern VA and went to the Hopkins cancer center in downtown Baltimore.
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1 ReactionYes, exactly. So you didn’t have nausea, or gastro issues? Mouth sores?
I live in NJ and will be heading to the Cancer Institute of New Jersey. They told me the average stay in the hospital is 17 days, so I’m hoping that I’ll be home within three weeks. I have to say, I’m incredibly nervous about it. My PETscan that I took after my induction treatments ended shows I’m in complete remission, and I feel great. So it’s really hard to rationalize having this done, which will make me feel really crappy and put me in isolation for months!
I didn't have either. They give you an intense anti-nausea medication when they infuse the melphalan. Then, I took Zofran around the clock, to prevent any nausea. They told me to watch out for diarrhea which I had one or two episodes that resolved right away. They will tell you what to look out for, in case they have to test for infections.
They will have you chew ice the whole time the infusion is happening (about 30 minutes for each infusion). Keep your mouth absolutely freezing cold - the ice will numb your mouth and keep the chemo from getting to it. It totally worked for me - my mouth was slightly redder than normal and my gums felt sore for about one or two days, but that's it, no sores at all.