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Anyone have experience with CAR-T therapy for multiple myeloma?

Posted by claydavis @claydavis, Nov 29, 2025

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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Lori, Volunteer Mentor | @loribmt | 5 hours ago
In reply to @kaydee26 "@loribmt asct. They didn’t tell me there was a big difference! My light chains were over..." + (show)
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@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.

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@kaydee26 Most likely your doctor didn’t feel the need to bring up a BMT/SCT vs an ASCT because it wasn’t really relevant to your diagnosis and treatment.
Bone marrow transplant, using donor cells (allogeneic transplant) isn’t generally a first-line treatment option used for Multiple Myeloma ASCT, such as the one you had in 2019, remains a standard disease-control approach. It offers the advantage of being able to use your own cells with less toxicity or issues with graft vs host disease. It’s not meant as a long-term cure but can help hold a patient in remission longer. It’s not unusual for patients with an ASCT for MM to have repeat procedure down the road.
Anyway, you now have gone through the CAR-T therapy instead of a repeat ASCT and doing really well! So that’s fantastic. However, because you are still considered immune compromised, your doctor has you taking an antiviral medication. This may help protect from reactivation of certain viruses that may be dormant in the body such as CMV, HBV, HPV and others.

You mentioned having some lung issues that pre-dating the CAR-T. So I hope you continue improvement in both areas so you can get back to fewer doctor’s appointments. ☺️

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kaydee26 | @kaydee26 | 3 hours ago
In reply to @loribmt "@kaydee26 Most likely your doctor didn’t feel the need to bring up a BMT/SCT vs an..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

@kaydee26 Most likely your doctor didn’t feel the need to bring up a BMT/SCT vs an ASCT because it wasn’t really relevant to your diagnosis and treatment.
Bone marrow transplant, using donor cells (allogeneic transplant) isn’t generally a first-line treatment option used for Multiple Myeloma ASCT, such as the one you had in 2019, remains a standard disease-control approach. It offers the advantage of being able to use your own cells with less toxicity or issues with graft vs host disease. It’s not meant as a long-term cure but can help hold a patient in remission longer. It’s not unusual for patients with an ASCT for MM to have repeat procedure down the road.
Anyway, you now have gone through the CAR-T therapy instead of a repeat ASCT and doing really well! So that’s fantastic. However, because you are still considered immune compromised, your doctor has you taking an antiviral medication. This may help protect from reactivation of certain viruses that may be dormant in the body such as CMV, HBV, HPV and others.

You mentioned having some lung issues that pre-dating the CAR-T. So I hope you continue improvement in both areas so you can get back to fewer doctor’s appointments. ☺️

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@loribmt Thank you for your response!

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