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@valerie912

Hello, my name is Valerie and my mother, Phyllis (age 61), will infuse her CAR-T cells on 2/11. We are from Des Moines, Iowa. She was diagnosed with Diffuse Large B Cell Lymphoma in September 2018. She went through two rounds of R-CHOP and R-ICE and one round of GemOx but the cancer continued to progress very rapidly. I will serve as her caregiver along with my two sisters, Venessa and Vania. Interested to hear others stories and advice for us.

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Replies to "Hello, my name is Valerie and my mother, Phyllis (age 61), will infuse her CAR-T cells..."

Hello Valerie,
I went through what seems virtually them same last year at age 62. I had Car T infusion August 1st.
Our take away is to believe what the doctors and staff tell you. I experienced all of the side effects they outlined. After day 2, I spent 2 weeks in the hospital, one week in intensive care. I remember virtually nothing of those weeks. Your mom will require all the care and support you and your sisters can provide. The therapy took a lot out of me. I was so thankful to have the family support I had. The doctors and staff at Mayo were extremely supportive as well. Never be afraid to call back to the station if you feel something is off. My wife feels it was important that she stayed with me 24-7 while I was in the hospital. Be patient, recovery took some time. I felt cold all the time for at least 2 months after the infusion. I experienced a lot of joint pain for at least four months. I found it difficult to eat for a long period of time. Nearly six months later. I can happily say I am doing quite well physically, I am taking long walks and am even back into participating in light sports. It was tough but so worth it.
All the best wishes from me to your Mom and entire family.
Bob

My son had his infusion for large B cell lymphoma. He has done well but has been extremely tired for the last 3 weeks. Has this happened in your case?