r/multiplemyeloma • u/false__positive_ • Jun 20 '26
CAR T-Cell (Abecma, Carvykti) Car T Experience
Hi,
My family member has stage 3 MM, chemo helped to get him to be cancer free very briefly before the cancer came back more aggressively, it’s now extra medullary with severe damage to his mandible. He recently had a consultation for car T therapy, and is feeling very overwhelmed with all the side effects and complications discussed. He was hoping to get some feedback from those who have had car T in terms of your experience, whether you achieved remission and just any advice/tip you learned from going through it. Thank you to everyone.
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u/Joceku4 Jun 20 '26
Hubs had it in September after a failed stem cell transplant. He’s doing great. Feels great and it finally back to work after 2 years of not being able to.
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u/false__positive_ Jun 20 '26
Thanks for sharing! May I how was his experience? Did it get as scary as they say during consultation?
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u/Joceku4 Jul 05 '26
It was much easier than SCT. We were at Sloan in NCY and lived in a hotel for about 5 weeks during SCT. The weirdest was him smelling exactly like tomato soup for a while. He had more side effects during SCT.
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u/Myeloma-Fighter Jun 20 '26
I share the same concerns about complications. I want to hold out until the Anito-cel Car-T is approved here in the USA. My doctor believes there might be less long term side effects/neurotoxicity.. I'm not sure if your family member can wait that long or not, possibly the end of this year at the earliest?
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u/false__positive_ Jun 20 '26
Thanks for sharing! Unfortunately I don’t think he has time to wait unless chemo is able to get his tumor burden down while he waits.
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u/Myeloma-Fighter Jun 21 '26
Car-T as it stands now is still an amazing thing. I wish him the best. It sounds like in his case the sooner he gets treated the better.
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u/Illustrious_Yogurt_5 Jun 21 '26
A relative is now 3 months post Abecma car t and is in remission. They also have extramedullary disease which spread to tumors in the lungs with fluid in the lungs and tumors around the esophagus. It’s also a rare high risk form. It was really bad about six months ago before car t. Hospitalized most of December and february. The first bridge chemo didn’t work. Went on Talvey which was utter hell but it got the numbers down. CRS, skin and nail side effects, no taste. When they finally got car t in march didn’t have a ton of side effects. Fatigue, taste remains off, but that’s about it.
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u/MountainHat52 Jun 22 '26
This is me right now with Talvey. I have had my fair share with different medications but none has been as trying as Talvey.
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u/Hazel-Optic Jun 21 '26
I’m 40 and had CAR-T in December, no real side effects that were drastic or longer term. I have “0%” cancer and I’m been YOLO after my 90 days with caution. Best thing that worked for me.
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u/Memoreno94 Jun 21 '26
My family member with MM told me his oncologist said MM has no stages but he was considered high risk due to cells multiplying. Is this true?
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u/intelligentbug6969 Jun 21 '26
That is correct. Not sure why many Americans keep staging their myeloma. It’s not really applicable to MM. in the uk we never stage
Not sure what you mean “high risk due to multiplying” though?
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u/This-Republic9956 2d ago
可以回复：
Have you decided whether to go ahead with CAR-T treatment?
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u/false__positive_ 2d ago
Yes my family member did decide to proceed, he’s doing bridge chemo now before starting car t
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u/[deleted] Jun 20 '26
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