Anyone with serious CAR T cell therapy complications?

Posted by jess786 @jess786, Jun 25, 2023

My 16 year old son had relapsed ALL and was told car T cell therapy would be the best option. He ended up having multiple seizures and was intubated for 5 days in the ICU for about a week. It was a horrible experience, I am not sure why we were told CAR T would be the best option. Yes, he did go into remission after that but there were many other options before CAR T was introduced to us. Seizures were definitely never brought up as a possible side effect. This was in 2022 in California.

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Welcome to Mayo Connect, @jess786. It’s encouraging to hear that your son is now in remission from ALL~acute lymphocytic leukemia after having Car T-cell therapy. I’m sorry to hear he had a relapse from earlier treatments. Those are words none of us what to hear who have gone through repeated rounds of chemo to get into remission.
Car-t Therapy and Stem Cell transplants are 2 of the options which could help keep your son in a durable remission from ALL. Having had a stem cell transplant for AML, I can understand your son’s doctor’s logic behind this treatment for him. From my experience with leukemia, if he relapsed once after standard treatment, the likelihood of that happening again increases.

I’m not sure what his other options were that didn’t involve either of those two procedures. Long term and maintenance chemo are generally the options. Chemo is really hard on the body and can bring about its own collateral damage. It sounds like your son is doing well now. But I’m sure it’s really difficult to overcome the memories of seeing him in intensive care.

Unfortunately with any treatment, whether Car T-, SCT or even chemo there are risks of a reaction. Seizures is on that list. Though with Car-T it is generally only in the first few weeks as there are adjustments with the new immune system to accept the cells. It’s called CRS or cytokine release syndrome. I’ve posted a link below which explains more about Car T and the potential initial side effects.

I’ve also included an article on ALL for you as a refresher.,effects%2C%20such%20as%20low%20white%20blood%20cell%20counts.

Are things stabilizing now with your son? What were his other options outside of Bone marrow transplant or CarT?


Hi Jess, thank you for sharing your experience, and I am so sorry you and your son had to go through. Wishing him continued progress and good health!

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