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…..

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

Lori, Volunteer Mentor | @loribmt | Jan 19 1:31pm

In reply to @kaydee26 "@loribmt asct. They didn’t tell me there was a big difference! My light chains were over..." + (show)

@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. ☺️

kaydee26 | @kaydee26 | Jan 19 3:44pm

In reply to @loribmt "@kaydee26 Most likely your doctor didn’t feel the need to bring up a BMT/SCT vs an..." + (show)

@loribmt Thank you for your response!

knikriverstudios | @knikriverstudios | Feb 17 1:13pm

I have Primary Plasma Cell Leukemia. Cancer is not in my

bones; it’s in my blood .

1 in 3 million have it world wide .

millerrae | @millerrae | Apr 4 3:52pm

Looking for comments from patients who have had experience with CART therapy for multiple myeloma

Colleen Young, Connect Director | @colleenyoung | Apr 17 5:24pm

In reply to @millerrae "Looking for comments from patients who have had experience with CART therapy for multiple myeloma" + (show)

@millerrae, welcome you will find several members talking about CAR-T therapy for multiple myeloma in this discussion:
- Anyone have experience with CAR-T therapy for multiple myeloma?https://connect.mayoclinic.org/discussion/seeking-patient-experience-info-on-car-t-for-mm/

Follow the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy support group for more discussions: https://connect.mayoclinic.org/group/car-t-cell-therapy/

Is CAR-T being recommended for you?

a621030 | @a621030 | May 4 6:53am

My wife is finishing a 17 day therapy session for MM using Car-T infusion after 3 days of chemo infusion. Results have been positive. Numbers are coming up and Docs are encouraged. This fairly new therapy for MM was a bit scary at first but good doctors and nurses have given tremendous support. We also do Immunotherapy once weekly at home, required indefinitely.

Lori, Volunteer Mentor | @loribmt | May 4 9:11am

In reply to @a621030 "My wife is finishing a 17 day therapy session for MM using Car-T infusion after 3..." + (show)

Welcome @a621030! This is wonderful news you’re sharing about your wife’s response, so far, with the CAR-T infusion for her MM! CAR-T therapy has been a tremendous breakthrough in longer remissions and care for patients with multiple myeloma.
You’re right, it is a bit scary to be involved in a relatively new treatment. But the success rate has been so encouraging.

How long has your wife had MM? What treatments were tried previously?

a621030 | @a621030 | May 4 10:10am

1st discovered in 2021 during regular blood test. She was on Revlemed for months but #s starting creeping up. Doc explained Car-T cell infusion then. I basically asked the Doc, “If this were you, with these #s, and an opportunity to try Car-T, what would you do? She answered “positively enroll”. Docs & nurses were wonderful throughout!

a621030 | @a621030 | May 7 7:12am

In reply to @a621030 "1st discovered in 2021 during regular blood test. She was on Revlemed for months but #s..." + (show)

@a621030
Yesterday, after labs came in...GOOD NEWS!

PICC line was removed as labs were all trending to the green, and now we continue with home treatment of Immunoglobulin. Have to undergo a Bone Marrow procedure to make sure everything is AOK with that, just a few blood tests, isolate for several weeks, and we're good to go.

Lori, Volunteer Mentor | @loribmt | May 7 8:05am

In reply to @a621030 "@a621030 Yesterday, after labs came in...GOOD NEWS! PICC line was removed as labs were all trending..." + (show)

Good morning @a621030 This was great news for your wife and you…I know as her designated care giver you’re shouldering much of this experience along with her. I’m sure she’ll be happy to have that PICC line out! That gets annoying. Ah, now she can shower without wrapping her arm in plastic. That’s a happy moment right there!
Wishing her continued success with her CAR-T!
Will you keep us updated, please?

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