← Return to Prepping for CAR T Therapy: What is the process like?

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HI @blewellyn

I was a caregiver for my mom also. 🙂 She underwent multiple lines of chemotherapy and a failed stem cell treatment before starting the CAR-T treatment. My mom had an aggressive type of Large B-Cell Lymphoma (DHL).

I would say for your mom to go into the process as strong as she can, which can be easier said than done. Be as active and get as much nutrition as she can. My mom was pretty weak going in but she was one tough cookie ;-). She did end up in the hospital for about 10 days due to her severe CRS. She was very petite going in, so the fevers took a toll and burned up what little reserves she had. Hence, why I say eat as much as she can. Also be prepared for yourself that she may be in the hospital, which is just as hard on a caregiver also. My mom went in during the heart of covid, so I couldn't see her (my personal hardest part of the process) but the staff is amazing and greeted me at the door in the lobby every day to give me update and let me send up goods to help cheer her.

My mom actually had no neurological symptoms, despite having lymphoma in her brain area and every part of her body. We were preparing for a strong neurotoxicity reaction. So it really goes to show that every person reacts so differently. Prepare for the worst and hope for the best. Some people have no symptoms at all. But we went in thinking the worst and made a plan together as a team if something would happen. That alone gave mom so much strength. Just being there to be their rock is such an important aspect; which sounds like you are doing an AMAZING job. You are a wonderful person to care for your mom through all this. 🙂

Feel free to ask questions or just let us know how it goes each day. It can be scary for everyone and we are here to help through the process. Know she is in wonderful hands and care at Mayo. ❤

Take care,


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Replies to "HI @blewellyn I was a caregiver for my mom also. :) She underwent multiple lines of..."


Thank you for telling me your mom's experience. My mom has Multiple Sclerosis, so I am assuming she will be at a higher risk for neurotoxicity too. It's nice to know that some of the side effects you were preparing for did not occur! I think that is also what makes CAR T so scary, everyone reacts so differently!

Thanks for your support! Is your mom still in remission?