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Did anyone undergo Car-T therapy for B cell lymphoma?

CAR-T Cell Therapy | Last Active: Nov 7, 2023 | Replies (76)
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@judyhelensmith2022

Hello. I had CAR-T in February this year (2022) and I had cytokine release toxicity as well as neurotoxicity. I was very sick for quite some time & I still suffer bone pain, fatigue & muscle weakness…
My cancer was DLBCL & I am in remission now. I had undergone 16 months of chemo/radiation/methotrexate/more high dose chemotherapy and I never had any luck at all. Therefore I was eligible for CAR-T (yescarta)

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Replies to "Hello. I had CAR-T in February this year (2022) and I had cytokine release toxicity as..."
Lori, Volunteer Mentor | @loribmt | Apr 15, 2022

Hello, Judy Congratulations on your CAR-T transplant. You’re on the cutting edge of science. It’s fascinating, isn’t it? (More so if you didn’t have to go through that!). Having had the procedure in February, you’re still pretty early in your recovery so I hope you start feeling much better over the next several months. It takes time to rebuild your body and your life after the disease, the rounds of chemo and your reaction to the CAR-T therapy.

I’m so happy to hear you’re in remission. What an amazing feeling that is. A reward for all you’ve gone through this year!
I had AML and we’d talked about CAR-T but I wasn’t eligible for that therapy so I had a bone marrow transplant. May I ask what your follow up treatment is like? Are you on any medications?

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Bob, Alumni Mentor | @grandpabob | Apr 15, 2022

Hello Judy,
I am so glad the hear that you had the opportunity to be treated with Yescarta. I like you had Yescarta treatment, I was infused in August of 2018 for large B Cell Lymphoma that would not react to any of the more common treatments. It sounds like our post treatment symptoms may be somewhat similar. My toxicity levels were very high as well, I spent 1 week in the ICU and another in the hospital recovering. Fatigue, muscle weakness, skin irritation lasted well over a year. (I was 62 years old at the time which could reflect on the length of recuperation.) I struggled with my appetite for quite some time. I found that eating a high protein diet helped.
How is your appetite?
Take care in your recovery.
Bob

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