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Bob

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Winnipeg

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MB

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Posts (7)

Mon, Feb 11 8:59pm · Post CAR T cell -- rash in CAR-T Cell Therapy

I have had no rash of any kind Greta. Six months since infusion.

Mon, Feb 11 7:09pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Hello Ann
Thanks for the heads up. I must admit that I have had some some thought about not needing to be so careful. That thought is now gone. Glad to hear Dave is doing much better.

Tue, Feb 5 11:37am · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

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

Nov 26, 2018 · Joint and muscle pain in CAR-T Cell Therapy

Hello Ann, thanks for your reply. I do hope that all is well with you folks now? I spent two weeks in hospital as well. One of those in ICU all due to Car T side effects.

Nov 21, 2018 · Joint and muscle pain in CAR-T Cell Therapy

Hi Colleen, at this point I would say marginally less. When I have the pain and stiffness it can be quite severe at times. I have it most every day for a time.

Nov 12, 2018 · Joint and muscle pain in CAR-T Cell Therapy

I am feeling very good now. Strength and energy is coming back nicely. I had pretty much all the published side effects that we were told about. Neuro toxicity, CRS, slow heart rate, high fever. I spent 2 weeks in hospital one of the in ICU. All worth the end result.

Nov 12, 2018 · Joint and muscle pain in CAR-T Cell Therapy

Hello all, I had Car T infusion Augut1st. I currently have joint and muscle pain though intermittent. Is anyone else having these side effects? I am not sure if it is from Car T or the chemo I had previous to the infusion.