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After CAR-T: How to deal with personality changes?

Posted by nfoltz @nfoltz, May 26 10:55am

I'm a caregiver for my husband who received a Car T cell therapy on March 23rd. He was in hospital for 12 days, came home for 10 days and returned for 8 more days for CRS and icans..he came home for another 16 days and returned with ICANS again for another week.
He has been home for 12 days. His personality is so different. He's angry, agitated, resentful, offensive and mean. A total shift in personality. Dementia like symptoms.
Has anyone else experienced anything like this???
Has anyone else

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Mentor
Lori, Volunteer Mentor | @loribmt | Sep 29 10:04am
In reply to @pegloyd "I had Car T nine months ago and dealt with ICANS and CNS. My personality was..." + (show)
Profile picture for pegloyd @pegloyd

I had Car T nine months ago and dealt with ICANS and CNS. My personality was very much affected by Keppra and the steroids. I was later told there is a term doctors have “keppra crazies “. Your son will return to himself after he’s off it. I wish him the best.

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Hi @pegloyd Thank you so much for sharing what you’ve learned during your CAR-T recovery. I’ve not heard of the “keppra crazies’ but I’m sure you’re ringing a bell with others who’ve experienced the side effects of the meds!

Hopefully your message will bring encouragement to @crimsonmae0825 during her son’s recovery from his CAR-T therapy.

If you don’t mind sharing a little more about yourself, what underlying diagnosis led to you requiring the CAR-T cell therapy?

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carolm25 | @carolm25 | Sep 30 1:49pm
In reply to @pegloyd "I had Car T nine months ago and dealt with ICANS and CNS. My personality was..." + (show)
Profile picture for pegloyd @pegloyd

I had Car T nine months ago and dealt with ICANS and CNS. My personality was very much affected by Keppra and the steroids. I was later told there is a term doctors have “keppra crazies “. Your son will return to himself after he’s off it. I wish him the best.

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@pegloyd
Sorry to hear about your KEPPRA effects but while I had successful CarT therapy 2.5 years ago I’d never heard of the drug until your post. Why did you have CarT therapy? And what condition prompted your doctor to prescribe the KEPPRA?

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