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Sun, Mar 15 11:53am · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Hi – this is Barb again with an update on my son, Greg. His shingles are gone, thanks to very heavy doses of Valacyovir which was given in the hospital by an intervenious drip. They did this for a week. That was Jan 28th. Our Dr in Winnipeg was in contact with the wonderful Dr Lin at the Mayo Clinic, Rochester during this time.
Greg has a lot of nerve pain, even now in his head. He has headache and numbness, but they saved his eye and he can open it. We are very blessed!
He also was referred to an eye specialist who helped so much. He is still on Valacyclivor by mouth.
It is a lousey disease and there is a vaccine called Shingrix that is a dead virus and is very effective.
Greg will receive it in about 5 months.
Hello to all caregivers. The CAR – T cell transplant is challenging, but you have access to such wonderful support at the Mayo. Listen to them and let them help you, because it is so worth it!

Mon, Feb 24 8:24am · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Hi – this is Barb – son Greg had T cell transplant in Sept /18. Still no cancer, but he came down with shingles ion his eye and scalp. It has been pretty awful. He had his transplant at the wonderful Mayo Clinic, Rochester. Has this happened to anyone else?

Fri, Jan 3 8:04am · Car-T therapy for B cell lymphoma in CAR-T Cell Therapy

Thanks for your reply. Greg is almost 18 mo out now. I can still see fatigue , but less now. Good luck and Happy New Yrar!

Dec 24, 2019 · CAR T CELL Christmas in CAR-T Cell Therapy

My son had CAR T infusion in Aug/19 and had the difficult side effects- was so worth it. He is still in remission and feeling great. The staff at the Mayo are so wonderful that words can’t describe them!
Good luck and God bless you this Christmas like none other!

Oct 11, 2019 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Greg is doing well. The immunoglobulin shots worked for him and brought everything to normal. He still gets tired, but overall is doing well.
His Next Petscan is in January. I am great!

Sep 5, 2019 · Non Hodgkin's Lymphoma- Watch & Wait Approach in Blood Cancers & Disorders

Can you tell me what dosage of curcumin you used? I hope your cancer stays away!

Jun 25, 2019 · Car-T therapy for B cell lymphoma in CAR-T Cell Therapy

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

Apr 29, 2019 · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

He is doing pretty well. Still gets tired though.
Not the worst thing. He is having immunoglobulin shots as he had a bad reaction to the infusion.
Thank you for asking.