CAR-T cell Therapy: Joint and muscle pain

I had a CAR t Cell BCMA trial for multiple myeloma at National Institutes of Health) on May 1, 2019. I had VERY LARGE SKIN NODULE in addition to vbone lesions, extra medullary mutiple myeloma. I suffered extreme joint pain. I thought it was due to having steroids stopped but my oncologist said it wasn't. I have read the joint pain is more common with people who have many tumors. My symptoms included knee pain, even when squatting down to the toilet or kneeling on floor. I also thought I had carpal tunnel syndrome because my wrist ached and had sever stabbing pain when I squeezed my hands (like using a wash cloth). In addition, to joint pain, I had severe neuropathy. My oncologist said neuropathy was from chemo received at start of CAR t cell therapy. Fortunately, my neuropathy is 90% better (8 months later). Also, my joint pain started improving 4 months after receiving CAR t cells. I still Have some joint pain but is approximately 70% better. The CAR t cell worked very well and I had about a 90% response. BUT it was short term, my tumors are now growing aggressively and I am starting chemotherapy next week and hope to have a CAR t cell reinfusion.

Your story is encouraging

Hi @jenn22 How are you doing? I was wondering if you found out anything useful with your appointment with the rheumatologist. Has the joint pain subsided?

Hello @jenn22
The joint pain lasted a few months for me. After learning others had some as well, I exercised and did a lot of stretching to insure the muscles were not contracting due to lack of use. This worked well for me. I did not do more than mention it to my doctor as I was not interested in taking medication for it. Are you in a position where you can stretch after your exercises for the time being until you see your doctor?

Yes. I have joint pan mostly in my shoulders and knees. Also my legs get real stiff after sitting for just a short time. I have never ever had any joint/ bone pain until after this CAR-T. I had mine in May 2019. Water aerobics is super helpful. But I want right know how long this will pain will last. I am going real see a rheumatologist next week I am a patient at MDAnderson.

Yes, so far so good. If you met Dave today you would never guess what he went through just six short months ago. He does have some aftereffects of the bowel surgery, but that is to be expected at this point. He sees a gastroenterologist for this. But as far as activities--he spent a few days here at home after we returned, but within a week he was working for a few hours at his office. Within two weeks he was back to work full time. His activities have been normal since then--although he can get tired every once in awhile. Like on Saturday, when he went up and down our rec room stairs into our storeroom carry all the large bins with our Christmas decorations!

I don't want to derail this discussion with a tangent, but please allow me to interject that we also have an ICU group on Connect (https://connect.mayoclinic.org/group/intensive-care-icu/)

ICU can be a very intense experience for both patients and family members. Late effects after in ICU experience is recognized as Post-Intensive Care Syndrome (PICS). If this is of interest to you, I wanted to let you know about the PICS online support group as well as the PICS in-person support group at Mayo Clinic, Rochester:
- Post-Intensive Care Syndrome (PICS) - Let's talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/

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.

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.

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.