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CAR-T cell Therapy: Joint and muscle pain

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Aug 9 9:26am | Replies (46)
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@mdbryson1953

Greetings All,

My husband Mark had CAR-T infusion on May 2, 2024. We are close to our 60 day check in. He experienced minimal CRS, but has developed some significant neurotoxicity symptoms in the last few weeks. Specifically involving the cranial nerves. He has also experienced low back pain, but we're not sure whether it is related to the CAR-T Nerve issue or his prior back issues related to his Multiple Myeloma. Has anyone else had experience with neurotoxicity related to the cranial nerves?

Thank you for any insight you may have.
Mary

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Replies to "Greetings All, My husband Mark had CAR-T infusion on May 2, 2024. We are close to..."
Colleen Young, Connect Director | @colleenyoung | Jul 4 9:43am

Hi Mary @mdbryson1953, welcome. I'm glad that your husband experienced minimal cytokine release syndrome (CRS). But I can imagine that the neurotoxicity related to the cranial nerves has both of you concerned.

I'm tagging a few other CAR-T members like @grandpabob @gregolson @annberkowitz @sunnyd @greta_k who have experience dealing with neurotoxicity and may have some thoughts. I'm also tagging @pgollinger and @myelomawarrior, who I believe had CAR-T cell therapy to treat multiple myeloma.

Mary, has your husband had further testing to find out the source of the lower back pain?

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pgollinger | @pgollinger | Jul 4 12:29pm

Hi Mary
I am participating in a clinical trial to have Car T as a frontline therapy for MM. I had the infusion in October. I had two mild fevers while hospitalized for 14 days. No other CRS. No neurotoxicity. I am also having lower back pain. Not sure why. An X-ray didn’t show anything. I have had two bone marrow biopsies since infusion, one in January and the next in April. Both came back MRD negative. I’m hopeful for a long remission but I’m high risk due to deletion of p17 and high tumor load. I’m not on any maintenance therapy per the trial. I hope your husband is in remission and his neurotoxicity resolves. I believe Car T is one of the best current treatments for MM. I wish him well.
Pat G.

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