1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

CAR-T cell Therapy: Joint and muscle pain

Posted by Bob, Alumni Mentor @grandpabob, Nov 12, 2018

Hello all, I had Car T infusion Augut1st. I currently have joint and muscle pain though intermittent. Is anyone else having these side effects? I am not sure if it is from Car T or the chemo I had previous to the infusion.

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

pgollinger | @pgollinger | Jul 4 12:29pm
In reply to @mdbryson1953 "Greetings All, My husband Mark had CAR-T infusion on May 2, 2024. We are close to..." + (show)
@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

Jump to this post

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.

REPLY
2 replies
mdbryson1953 | @mdbryson1953 | Jul 4 8:59pm

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.

REPLY
1 reply
mdbryson1953 | @mdbryson1953 | Jul 4 9:04pm
In reply to @pgollinger "Hi Mary I am participating in a clinical trial to have Car T as a frontline..." + (show)
@pgollinger

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.

Jump to this post

Thanks Pat. Yes, CAR-T is a blessing! My husband is also high risk with 17p deletion, and (11,14)translocation. It's a journey, but I'm glad to hear you are RMD negative. So far we are too!

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 10 5:13pm
In reply to @mdbryson1953 "Hey Colleen, I started ti reply, but hit something, so I don't know where it went...." + (show)
@mdbryson1953

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.

Jump to this post

@mdbryson1953, glad to hear that the back pain has resolved. How is he doing on the high-dose steriods? Will they continue for a while yet?

REPLY
rogweigel | @rogweigel | Aug 8 5:38pm

How are things going for you?

REPLY
rogweigel | @rogweigel | Aug 9 9:26am
In reply to @pgollinger "Hi Mary I am participating in a clinical trial to have Car T as a frontline..." + (show)
@pgollinger

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.

Jump to this post

Have you changed your diet?

REPLY
View MoreView Less
Please sign in or register to post a reply.