CAR-T cell Therapy: Joint and muscle pain

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?

I am feeling very good now. Strength and energy is coming back nicely. I had pretty much all the published side effects that we were told about. Neuro toxicity, CRS, slow heart rate, high fever. I spent 2 weeks in hospital one of the in ICU. All worth the end result.

Hi Bob, my husband Graydon had the CAR T infusion on the 2nd of October so only 45 days out but he has had considerable bone and joint pain. I asked him if he thought it was Chemo or CAR T relat d and he thinks probably a combination of both for him. He has had a lot of accumulated chemo and radiation over the last 3 years. That is one reason why he may not recovering as quickly as some of the other patients. So sorry we didn’t have a good answer to your concern but know that you are not alone in your symptoms. Maybe as more patients go through the treatment more info will become available. Glad to know you are doing very well otherwise. We hope for the same. Greta

Though I had 10 days in the hospital (2 ICU) and remember little of a week of that time, joint or bone pain wasn't an issue for me ..... Mark

Mark this is Brenda. Bob’s wife and care giver. He remember very little of the whole two weeks he was in the hospital and even some things from after he got out. He has no real desire to know or hear about it either. As our son (40years old) said, “ It’s okay dad you don’t need to remember. Mom and I will never forget. “
I think the joint pain came long after release from the hospital.
Brenda

Thanks for your message, Brenda. Your son summed it up well. Bless your hearts, 2 weeks is a long time .... But when we were asked if it was worth it, we of course said that it was. May you have many GOOD memories! Mark

Welcome to Connect, @grannybrenda and @grandpabob. I love your usernames 🙂 I hope you also saw the CAR-T group introductions discussion.
* CAR-T Cell Therapy: Introduce yourself and connect with others https://connect.mayoclinic.org/discussion/car-t-cell-therapy-introduce-yourself-and-connect-with-others/

Feel free to peruse the posts and get to know the members of our small, but growing group. Bob, you mention that the joint pain is intermittent. Are you finding that is also getting less as time goes on?

Hi Colleen, at this point I would say marginally less. When I have the pain and stiffness it can be quite severe at times. I have it most every day for a time.

Hello @grandpabob! David has never mentioned any joint or muscle paint/aching or stiffness. He also was hospitalized for at least two weeks, including two stints in intensive care. But he had an unusual complication, caused by the effects of CAR-T--but not a side effect of the immunotherapy, which prompted emergency abdominal surgery. So his second stint in ICU and some of those days in the hospital were post-surgical.

Hello Ann, thanks for your reply. I do hope that all is well with you folks now? I spent two weeks in hospital as well. One of those in ICU all due to Car T side effects.