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Profile picture for kirkwilliams2049 @kirkwilliams2049

Sorry to hear about the neurotoxicity. I had CAR-T to remission about 18 months ago. I had a full body rash about 12 months ago. After biopsy, they couldn't pin it down to CAR-T as a cause. I think there is high probability that this was the cause as I have never had that sort of thing before. I am 76. My immune system has not completely returned. My immunoglobulins are quite low and so are my red counts and hemoglobin. Having said that, my wife passed on a flu bug to me in the spring and we both recovered at the same time. So maybe these are just numbers. Other than that I am doing very well - golfing, gardening, camping. I do stay away from crowds, however, and still wear a mask when shopping. Hope the neurotoxicity is short lived. Best wishes! And remember: positivity is the best therapy.

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Replies to "Sorry to hear about the neurotoxicity. I had CAR-T to remission about 18 months ago. I..."

Thank you!
So glad to hear that you are doing well.
We are learning that the medical professionals still have a lot to learn about long term effects of CAR-T.
My wife also had an itchy reaction about a month after infusion. She had what appeared to be numerous bug bites in various areas of her body. Her care team, who we feel are excellent, did not know why she had them.
We also are very cautious about her immune status.