CAR-T cell Therapy: Joint and muscle pain

HI Just finished my Cart T first August. I have begun to get deep pain all over my body.
Its been at least 45 days since my Cart T. Doctors say its not the dreaded side effect, but it is an side effect. We're still searching on how to make it not so painful. Keeping me in bed too much Im ready to get going. I'm still fatigued and moving slow but that's OK

Nice to meet you
Linda

Hello @grandpabob, welcome to Connect. I would like to invite a few other members to this discussion who have either gone through the treatment or have had a loved one go through treatment to share if they have had any joint and muscle pain. @annmillercarr, @raemark, and @greta_k may have some experience to share with you about whether or not they or their loved one had joint/muscle pain.

@grandpabob, other than the joint and muscle pain, how are you feeling? Did you have any other side-effects that you had to deal with?

Hello
Wondering if anyone is having ankle and leg swelling after Car-T therapy.
Had my Car-T one year ago and oncologist has no idea why im having this. Blood test still show remission which I’m thankful for but would like to have a reason for the swelling.

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