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Ultra-high-risk MM post-transplant update
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 18 hours ago | Replies (16)Comment receiving replies
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!
Replies to "I live in NJ and will be heading to the Cancer Institute of New Jersey. They..."
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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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.