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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