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Anyone have experience with CAR-T therapy for multiple myeloma?
I was diagnosed with MM in July 2022 at age 53. Did induction on RVD followed by autologous transplant in Dec 2022. Never achieved MRD negative, and have been on Darzalex trial for maintenance. Disease has returned over the past 3-4 months and now contemplating bridging therapy in prep for CAR-T. Still working in fairly high stress occupation and trying to figure out what CAR-T looks like while trying to work. Any insights or counsel from the community? With gratitude…..
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Hi @claydavis, I moved you question to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy support group here: https://connect.mayoclinic.org/group/car-t-cell-therapy/
I'm tagging @4health4bonnie @mohusker @jrbris23 @cjj2 @pgollinger @merrle @myelomawarrior who have talked about CAR-T therapy for multiple myeloma and may be able to help answer your questions.
Also see these related discussions:
- Stem cell transplant vs CAR-T: What can I expect with CAR-T?https://connect.mayoclinic.org/discussion/stem-cell-transplant-vs-car-t/
- CAR-T after MM relapse 13 months post-ASCT https://connect.mayoclinic.org/discussion/car-t-after-mm-relapse-13-months-post-asct/
- Starting pre-tests for CAR-T infusion for multiple myeloma https://connect.mayoclinic.org/discussion/car-t-infusion-for-multiple-myeloma/
@claydavis, working during treatment is hard to predict and may depend on what type of work you do. Working a stressful job is hard at the best of times. Are you able to take time off during treatment?
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3 ReactionsAnyone tried CAR-T
with Plasma Cell Lukemia Lukemia ?
No, but I have it and am on my fifth of eight three week cycles of
Of chemo , after three weeks of induction therapy at Fred
Hutch in Seattle .
Plasma Cell Leukemia was diagnosed on April 28 2025.
After these cycles , we’ll evaluate
the next move. . CAR-T ?
Don’t know ?
Please keep in touch.
We are Rare!
Happy New Year
This is a continuation of above. Answering
Myself.
Just looking for any one else
With Plasm Cell Lukemia
as with stem cell transplant car t requires hitting your immune system hard prior to, and then almost quarnteening yourself for a month or more after. you will probably not be working your job for at least a month.
my 54 yo daughter went through that but her t cells / marrow were so exhausted by 1.5 yrs of various trials, that it didn't really take. she was triple risk , meaning three markers, so it was a long shot. i hope you don't have similar risk markers. those without high risk markers seem to do much better with car t. good luck.
Hi claydavis. We have the same last name and same disease! Was diagnosed with multiple myeloma in 2018 at age 58.
I worked in healthcare during all my treatments, which wasn’t wise because of the lack of immune system. But I HAD to work! I had the Car T transplant in 2024. It put the cancer into remission! I wish I could have done the Car T BEFORE the Bone Marrow Transplant, but you have to have 4 lines of therapy before the Car T.
You have to stay home from work and germs and not drive afterwards, for like three months,
as your system recovers.
I would recommend the Car T Cell transplant.
Re:claydavis
Hi. I realize now that I didn’t disclose that I had a BMT in 2019 for the myeloma. After getting COVID twice, it relapsed and I was back on chemo. THEN in 2024 I had the Car T Cell transplant. The cancer is still in remission, but now I have lung disease. Some say that the Car T contributed to that, but I know I had some scarring in there previously, so I’m not sure.
I’m had car t on March 26, 2025. I think I had the best possible experience. I had CRS for 24 hours which was expected. I had fatigue for at least three weeks. I was given very detailed instructions about many things I could not do because of no immunity. I was very isolated and could not have worked. I had 24 hour care for thirty days. The good news is that I am in remission and MRD negative. I have not had to have any additional treatment. Except for sleep issues, I feel normal and have my old energy back. Through this whole process I have walked at least twenty minutes a day.
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2 ReactionsHi @kaydee26. In 2019 Car T therapy hadn’t been approved for MM yet. So the stem cell transplant you had then was the current treatment option at the time. Can you clarify for me please. Did you have an actual bone marrow transplant using donor cells whereby you have an entirely new immune system? Or are you referring to an ASCT (autologous stem cell transplant) using your own stem cells? There’s a significant difference between the two procedures.
It’s wonderful you’ve had such a positive experience to the Car-T therapy, so thank you for sharing with the group. How often do you have follow-up appointments? Are you on any maintenance meds?
@loribmt asct. They didn’t tell me there was a big difference! My light chains were over 40,000 at diagnosis. My bone marrow was 70 percent cancer. I went on aggressive treatment for a year.
Since the Car T, in March of 24, I’ve only had Bloodwork follow ups. I’m only on a blood thinner because of previous clots in the lungs, and an antiviral that they want me to stay on for some reason. When I started on it, the reason was the chemo treatments could cause mouth sores.
Anyway, I am on nothing for the blood cancer! I am now dealing with the lung disease only. But I am still having my blood checked regularly.