My husband was diagnosed with AML back in 2015. Since his initial treatment with chemo, he has been on 3 different clinical trial medications to keep him in remission plus a stem cell transplant from an unrelated donor back in 2017. He started experiencing chronic GVHD in June of 2018 and we have been battling rejection issues for 2 years now. His oncologist has told us he will not get any better and our only hope is if they come out with a trial drug for GVHD. My husband was 66 when he was diagnosed.
I would like to hear from anyone who has gone through similar experience as ours and see how they handled their situation. The GVHD has really impacted his eye sight and hearing to the point where his quality of life has been severely impacted. I would like for my husband to go to Mayo to see a team of doctors that are all there together to see if there is anything further that can be done to improve his quality of life.