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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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Lori, Volunteer Mentor | @loribmt | May 28 11:08am

Hi @nfoltz I’m so sorry your husband is experiencing such a personality shift after his CAR-T therapy. This has to be so frightening and difficult for both of you.

It sounds like your husband has had a couple of recurrences for ICANS (Immune Effector Cell-Associated Neurotoxicity Syndrome), which is a neurological condition primarily associated with CAR T-cell therapy. It’s not uncommon and from my understanding it ICANS can often spontaneously subside. But it certainly can be a complication.
When your husband returned to the hosptial, what was the treatment he received to help with the symptoms?

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nfoltz | @nfoltz | Jun 1 9:47am
In reply to @loribmt "Hi @nfoltz I’m so sorry your husband is experiencing such a personality shift after his CAR-T..." + (show)
Profile picture for Lori, Volunteer Mentor @loribmt

Hi @nfoltz I’m so sorry your husband is experiencing such a personality shift after his CAR-T therapy. This has to be so frightening and difficult for both of you.

It sounds like your husband has had a couple of recurrences for ICANS (Immune Effector Cell-Associated Neurotoxicity Syndrome), which is a neurological condition primarily associated with CAR T-cell therapy. It’s not uncommon and from my understanding it ICANS can often spontaneously subside. But it certainly can be a complication.
When your husband returned to the hosptial, what was the treatment he received to help with the symptoms?

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@loribmt
Good morning, thank you for replying.
Tom received steroids and Keppra.
He weaned off this past week.
He's a totally different person. We've been together 48 years and he's a rude, mean, angry stranger to me. Our sons, grandchildren and friends all agree. It's so sad ...
I hope you are correct and he gets a spontaneous correction. 🙏🙏🙏

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Colleen Young, Connect Director | @colleenyoung | 17 hours ago
In reply to @nfoltz "@loribmt Good morning, thank you for replying. Tom received steroids and Keppra. He weaned off this..." + (show)
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@loribmt
Good morning, thank you for replying.
Tom received steroids and Keppra.
He weaned off this past week.
He's a totally different person. We've been together 48 years and he's a rude, mean, angry stranger to me. Our sons, grandchildren and friends all agree. It's so sad ...
I hope you are correct and he gets a spontaneous correction. 🙏🙏🙏

Jump to this post

@nfoltz, it's been a week since Tom weaned off steroids and Keppra. Have you seen any improvement? Have you talked to his care team about the changes you and your family notice? How are YOU doing?

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nfoltz | @nfoltz | 6 hours ago

Hello, thank you for reaching out.
He's still angry, agitated and depressed. Seems a little less confused.
Appetite is good and he starting to gain some weight back.
He still has no filter and says mean things to everyone .
He's not the man I've been married to for 44 years.....I hope my husband returns. I don't like this one.

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