← Return to CAR-T cell Therapy: Joint and muscle pain

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@wycowgirl307

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.

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Replies to "I had a CAR t Cell BCMA trial for multiple myeloma at National Institutes of Health)..."

@wycowgirl307 Sounds like you had a very difficult time after CAR T cell therapy. Has the oncologist said if you might have the same side effects this time around? Have they mentioned any preventative measures that can be done?

Much good health to you in your next phase of your journey. Please keep us updated. Car T therapy is in my future, too.