CAR-T Parkinsonism in 78 year old father-in-law
This post includes end of life discussions.
>!A warning about this post: in includes the loss of my father-in-law from complications of CAR-T, so please take care if this feels like too much to read right now. ❤️!<
>!We found it very difficult to find information about Parkinsonism from CAR-T when we were going through it. I’m sharing our story in case it helps another family.!<
>!Yesterday, 9 months after my Father-in-law’s CAR-T infusion, he passed away from severe parkinsonism that developed after Carvykti. He was 78 years old and received treatment at Ochsner in Louisiana (United States).!<
>!My father-in-law received CAR-T on September 2, 2025. Prior, he was very active and in good spirits about the treatment. !<
>!In the hospital, he had one episode of ICANS that was treated, and he appeared to recover in 24 hrs.!<
>!But something was off when he got home.!<
>!He had a flat affect, seemed zoned out, and began developing a tremor. Yes, he was still passing all cognitive tests, but he was not himself.!<
>!The symptoms worried us, so we took him to the ER 7 days after discharge. He was given a mild dose of steroids and sent home because he was still passing cognitive tests. His treating CAR-T physician never visited him during that hospitalization.!<
>!As his symptoms worsened, he was referred to palliative care, where we were told it was depression and he was started on olanzapine.!<
>!When he continued to decline, we were then told the flat affect was due to the olanzapine, and our concerns were written off. This was so frustrating and, ultimately, delayed further treatment.!<
>!After pushing hard for more attention (thanks to Facebook support groups), I was able to get him back to his CAR-T doctor around six weeks after his CAR-T infusion (mid-October).!<
>!Our doctor was perplexed and said he would consult colleagues about what to do.!<
>!Over the following months, we tried intrathecal chemotherapy and Jakafi to kill off CAR-T in his brain (the going theory) but it didn’t help.!<
>!His tremors and frailty worsened even with physical therapy. The flat affect never lifted. Cognitively, he continued to pass tests and had a sharp memory, but he became withdrawn, answering only in short sentences, with little emotion and no smiles.!<
>!Eventually, he became too weak to manage the three steps into his home. He needed around the clock care getting up, sitting down, and moving.!<
>!This past week, he stopped eating and drinking and told us he was ready to go.!<
>!Yesterday, he passed away from the neurologic complications that followed CAR-T treatment, despite his cancer being in full remission.!<
>!Our doctors still cannot say with certainty why this happened. The leading theory is inflammatory or immune-mediated injury to the basal ganglia or nearby brain structures from the CAR-T cells (essentially, they leaked into his brain and caused damage... and they couldn’t figure out how to stop it).!<
>!One treatment option that was discussed months later was the “nuclear option,” essentially destroying the CAR-T cells entirely (and thus hopefully removing them from his brain) but they felt he was too weak to handle this aggressive treatment.!<
>!I firmly believe our family was NOT adequately informed about the true scope of neurologic risks.!<
>!I believe our medical team’s response was too slow when his serious symptoms began.!<
>!And finally, I believe the option to reverse CAR-T was not presented to us early enough. He still had good strength when we brought him to the ER 7 days after he was discharged; at that time, I believe he might have been able to handle the reversal.!<
>!Even so, my father-in-law did not regret pursuing CAR-T. A month ago, he gathered all of his strength to visit his doctor and say, “thank you.” I truly believe he was trying to set an example for me and my husband. He had so much grace.!<
>!If your family starts noticing subtle personality changes, flat affect, tremor, or simply that “something just isn’t right” despite normal cognitive testing, please push hard and push early for answers.!<
>!Thank you for allowing me to share our story. I hope it makes a difference.!<