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

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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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Replies to "Hi @nfoltz I’m so sorry your husband is experiencing such a personality shift after his CAR-T..."

@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. 🙏🙏🙏