CAR-T Cell Therapy: Introduce yourself and connect with others

@floridaed
Went through Breyanzi CAR-T this last June. It worked...so far! I am in remission. For me it was so much easier than the steam cell transplant. I had light chemo and some radiation as my bridge treatment. There can be complications with this regimen such as cytokine release syndrome (affects immune system) and neurotoxicity. I was very fortunate and did not have any issues. Let me know if you have any other questions regarding the experience. Good luck to you!!!!

I relapsed in October 2023 and was treated with CAR T the following February. It was really a smooth ride compared with RCHOP and RGDP. I am still in remission and feeling great.

Best wishes and best of luck! And remember that positivity is the best therapy.

Hi.
My double hit lymphoma (DLBCL) is active again in right psoas muscle. I didn't make it through all cycles of R-EPOCH, so my doctor says CAR-T is next. Preparation includes glofitamab.
Breyanzi is the CAR-T name.
Anyone have experience with this regimen?

Sounds like my exact reaction. They suspected that some of the B cells had migrated to the cutaneous level and that the modified T cells were interacting with them. The biopsy did not confirm.

Started Zanubrutinib about 1 1/2 week ago, last Thrusday had to go to emergency room because my side had stabbing plans like a chef knife going in. They kept my till Friday, ran various blood tests and smears, CT scan ,echocardiogram, chest X-ray. Bottom line inflammatory spleen caused by excess WBC PRODUCTION WHICH IS 86 AND SECOND TIME MEASURED 94. See my oncologist this Tuesday.
This is wild.

Thank you!
So glad to hear that you are doing well.
We are learning that the medical professionals still have a lot to learn about long term effects of CAR-T.
My wife also had an itchy reaction about a month after infusion. She had what appeared to be numerous bug bites in various areas of her body. Her care team, who we feel are excellent, did not know why she had them.
We also are very cautious about her immune status.

Sorry to hear about the neurotoxicity. I had CAR-T to remission about 18 months ago. I had a full body rash about 12 months ago. After biopsy, they couldn't pin it down to CAR-T as a cause. I think there is high probability that this was the cause as I have never had that sort of thing before. I am 76. My immune system has not completely returned. My immunoglobulins are quite low and so are my red counts and hemoglobin. Having said that, my wife passed on a flu bug to me in the spring and we both recovered at the same time. So maybe these are just numbers. Other than that I am doing very well - golfing, gardening, camping. I do stay away from crowds, however, and still wear a mask when shopping. Hope the neurotoxicity is short lived. Best wishes! And remember: positivity is the best therapy.

My wife had CAR-T therapy for Lymphoma cancer in her brain.
Her modified T cells were infused on May 20. She is now, 2-1/2 months later, experiencing symptoms of neurological toxicity.
I am interested in hearing from other CAR-T patients regarding their long term side effects.

Welcome @aalietz. I moved your post to the introduction thread of the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy support group https://connect.mayoclinic.org/group/car-t-cell-therapy/

@aalietz, I look forward to learning more about you. Are you a candidate for CAR-T cell therapy?

Looking for CAR-T treated patients and their experiences with subsequent side effect