CAR-T cell Therapy: Joint and muscle pain

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.

Hey Colleen,
I started ti reply, but hit something, so I don't know where it went. Mark is on high dose steroids to treat the neurotoxicity of the cranial nerves. We think that has resolved his back pain. The neurotoxicity does have us nervous, but we believe it will resolve over time. It's scary though as our CAR-T team has not seen CAR-T impact the nerves in this way. He is in remission from the MM, but weak from the steroids. We're at Day 61, looking forward to positive news by day 90.

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.

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

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

I was devoid of most of my energy after CAR-T for about 6-8- weeks. Very low BP and could not sit upright no longer than 20-30 minutes. My bursa sacs in my hips flared up for a while and was very painful. The left side still flares up on occasion. I ice and take anti inflammatory OTC pills. Seems to help. Once I started to recover, my energy came back quickly. It's been 11 months since CAR-T and I still mask up. We stayed cooped up for a long while and I got special accommodations at work to be in a office instead of out in open. I still take all safety precautions and we go out to eat earlier than normal. Hope your wife continues to improve.