Mayo Clinic Connect
Did anybody on here undergo car-t therapy
Hi, my name is Kevin. I have Follicular B-cell nonHodgkin's lymphoma. I am currently receiving TTI-622 by Trillium Therapeutics, an experimental drug clinical trial. They are trying to extend me into the Allogene Car T Cell trial on August 11, 2019. I am going through the Colorado Blood Cancer Institute in Denver. I have had several treatments since 2015, including R-CHOP and RICE chemotherapy and an autologous stem cell transplant (at CBCI). I relapsed from my stem cell transplant within 10 months. Everything seems so surreal to me. I am scared and feel somewhat lonely. It helps reading about other people's journey on this site. This is the first time I have accessed information in this manner. Kevin
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@kevin_153, here are a few additional resources should you be interested in researching a bit more about CAR-T trials at Mayo Clinic or a potential second opinion:
– Clinical trials at Mayo Clinic search, https://www.mayo.edu/research/clinical-trials
– If you are interested in inquiring about a potential second opinion at Mayo Clinic, http://mayocl.in/1mtmR63
– Mayo Clinic's CAR-T cell therapy homepage, https://www.mayoclinic.org/departments-centers/car-t-cell-therapy-program/home/orc-20404317
@kevin_153, you mentioned that you relapsed from your stem cell transplant within 10 months. Many members have inquired about the process of undergoing a stem cell transplant, even though you relapsed, are you comfortable sharing your overall experience with your autologous stem cell transplant?
My son received CAR T Cell Transplant 11 mo ago.
He is still cancer free. He is well, but gets very tired.
Does anyone else have this problem? Barb
I am 11 months in as well tiredness has long past for me. Did a lot of exercise to help me get past that.
Liked by Colleen Young, Connect Director, Justin McClanahan
The overall experience was good. There were some very tough days. However, I tried to remain active every day I was in there. I would walk laps no matter how bad I felt. The day my ANC was zero is etched into my memory forever. I did an on-line course while I was in the hospital for a month. It helped to keep me distracted. I was very blessed through the process.
Liked by Justin McClanahan
I am about 8 months out and I am doing well also. I think one of the biggest side effects I have experienced not only with CAR-T but also multiple rounds of chemo has been fatigue. I can get tired very quickly sometimes and at other times I am fine. I try to take time to rest before I get tired. I have found that it is different for everyone and it just takes time to recover. Graydon
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