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CAR-T cell Therapy: Joint and muscle pain

CAR-T Cell Therapy | Last Active: Dec 20, 2023 | Replies (37)

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@colleenyoung

Welcome @gregolson, I'm sorry to hear that there are no clear answers to the cause or solution for your wife's evolving joint pain. You obviously are doing your homework in searching for answers. I'm tagging fellow CAR-T recipients like @grandpabob @shorheal @wycowgirl307 @annberkowitz and others who have also experience joint and muscle pain.

Has your wife ever been given growth hormone factors (granulocyte colony-stimulating factor) to treat the neutropenia? Did she have an autoimmune condition before being diagnosed with lymphoma?

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Replies to "Welcome @gregolson, I'm sorry to hear that there are no clear answers to the cause or..."

Thanks for responding. Her neutropenia is not severe with Neutrophils running in recent months in the range of 600 to 900 and once at 1100 since having CAR-T on 6/26/23. WBC is fluctuating around 1.4 to1 .6 or so in recent months. While all 3 of her oncologists (original diagnosis and treatment oncologist where we summer, local oncologist where we winter, and CAR-T specialist) seem surprised she hasn't rebounded more they have not been all that worried about the levels as long as she's on a prophylactic regimens of anti-viral, anti-fungal, and anti-biotic meds and haven't been inclined to want to introduce a growth factor at this stage as it may not be sustainable and as we would understand might encourage other than neutrophil growth and expansion, i.e., don't want to risk encouraging anything bad benefiting from a growth factor. Position has been to allow her natural system do it's thing to bring these numbers back into line. She has no prior history of autoimmune issues but did have 6 rounds of R-CHOP, had a clean PET/CT, clean bone marrow biopsy, 18 fractions of consolidative radiation of a remaining small mesentric mass, then on 3/1/23 roughly three months post prior treatments showed DLBCL activity in 2 new areas, another bone marrow biopsy showing no involvement, 3 rounds of polivy/rituximab as a bridge which resolved all signs of disease, a clean PET/CT before the lymphodepletion and 6/26/23 CAR-T so her immune system has taken a beating but not necessarily worse that probably many experience. All her other blood count levels have responded well and basic Rheumatoid Factor and IgG parameters haven't suggested any apparent issues although maybe more in depth testing might be on the horizon.