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

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?

@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. 🙏🙏🙏

@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?

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.

@colleenyoung I am going through this with my 25 year old son who underwent CarT 8/17. He is angry, agitated, paranoid.

How is your husband doing now?

Hi @crimsonmae0825 I just wanted to take a moment to welcome you to Mayo Connect and tag member @nfoltz. I think your earlier comment about what your son is experiencing following CAR-T therapy, was meant for them. Here’s a link to your previous comment. https://connect.mayoclinic.org/comment/1661819/

I’m so sorry your son is having these disconcerting side effects of being angry, agitated and paranoid. He’s is still very early in his recovery and often symptoms like these do dissipate. What steps have his doctors taken to help your son?

@nfoltz please see my question above. Thank you!

@crimsonmae0825
Sorry to hear about your son’s personality changes. I doubt they are permanent. He’s young and I can personally understand his frustrations. I was not prepared either for the depth of fatigue nor timing of recovery. Car-T is not like recovering from the flu!!
I went thru Car-T as a 1st line therapy in a LDBCL trial over two years ago. I am in remission and expect to stay here. But please refer to my description of the neurological and emotional impacts below. Hopefully by now your son’s hematologist has set up some speech and other therapy support - which was essential for my mental, emotional, and physical recovery. Again, this is not recovering from the flu.
Car-T therapy recovery for me was toughest from the unknowable fatigue impacts. But I was 79 at that time - “a very healthy 79” according to my managing hematologist. My Car-T team at Phoenix Mayo Clinic clarified well in advance of the infusing my bio-engineered T cells that I must accept that the Car-T therapy would keep me in the hospital a minimum of 2 weeks. It turned out 16 days in my case because two additional days were due to an Afib side effect.
Two days following the Car-T infusion, the team placed me in ICU for monitoring the expected cytokine storm including possible neurological impacts. I believe I was somewhat sedated for part of that week but I was very aware of having to write a sentence every so often to measure my neurological acuity. After returning to my regular room for the second week in hospital I had speech, PT, and OT therapists daily to gauge my verbal and physical acuities. I was transferred to an intensive rehab facility for an additional 2 weeks which restored my strength and confidence once again. I recouped the neurological skills fairly rapidly but was weak physically for several more weeks. I still have some lapses recalling a word now and then. But I had a strong appetite the complete time and was encouraged to consume 3 bottles of a 30 mg protein drink each day for the month beginning hospitalization.
I detail this period because my research shows how important the monitoring of that cytokine storm is to the neurological responses. From what I gather in your description of your son’s recovery, he has not even passed the 1st month post infusion date! He needs more time to feel close to recovery. I don’t know where your son’s procedure was done or their protocol post infusion or level of neurological monitoring during the possible cytokine storm.
Given that I was still in an intensive recovery facility the second half of the month following infusion, I would still have at least several weeks left of intense therapy compared to your son’s timing.
His being a young person I can understand his impatience, frustration, and even anger. My greatest frustration was being overly bored yet not knowing how long recovery would take. I had been an energetic and active person my entire life. I had experienced nothing remotely similar to the physical fatigue experienced with this therapy. But, the alternative would have been months of chemotherapy, likely nausea, pain, and a greater possibility of relapse, where as my experience with Car-T therapy was painless, no nausea, and cancer free beyond 2 years now. And the research is already showing very good results in remissions from Car-T therapy.
Your son’s frustrations are understandable. But if you both accept that Car-T takes multiple weeks of intensive therapy instead of a few to recover, you both can relax and he will recuperate more easily.

@crimsonmae0825, I hope you saw the helpful post from @carolm25

How is your son doing? How are you doing?