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CAR-T Long Term Neurological Effects Like Lewy Body Dementia?
Hello, I'm new to this discussion group and am looking for information. My mother was treated with Yescarta (manufactured by Kite, acquired by Gilead) in 2018 following several rounds of ineffective chemotherapy and a blood marrow transplant.
Although Yescarta was effective in putting my mom's cancer into remission, we strongly believe that it caused Lewy Body Dementia (LBD). Over the past 6 years, she has been in slow decline and now has severe dementia, is unable to physically move, and has had 24/7 care for the past 5 years.
The companies that manufacture CAR-T state the potential negative short-term neurological effects but --as far as we are aware -- either do not have evidence and/or are not disclosing longer-term debilitative effects of the drug, like LBD.
From speaking with numerous doctors and scientists at Pharma/biotech companies, it sounds like they are aware of the potential long-term affects.
My dad and I are desperately in search of other families who might be able to share their experiences with loved ones who have had long-term neurological effects from the treatment.
I'd be grateful for any information!
Rachel Teisch
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@rteisch Rachel, this must be so hard to watch your mom's slow decline and to suspect that the treatment that put her cancer into remission may have caused long-term neurological effects.
I know your primary reason for joining Mayo Clinic Connect is to find other families who have possibly had a similar experience. In the meantime, if you would like to connect with other caregivers caring for someone with dementia, you can also join the discussions in the:
- Caregivers: Dementia Support Group https://connect.mayoclinic.org/group/caregivers-dementia/
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2 ReactionsI too am interested in the long term effects. I will be receiving CarT soon. I research as much as possible, but have not found definitive answers. RCHOP was debilitating. Mylin gone in feet ankles and hands. I am 70, and cannot keep the non hodgkins lymphoma from returning. So. Here goes the positive belief I have to eradicate it. I am a 55 year vegetarian, bananas. Avocado's, eggs, strawberries. Black bean burgers, protein bars , milk. Cheese, main staples. I will keep you up-to-date. Love you all!