Quote:
Originally Posted by sbk007
I get the impression that gvhd is a big concern of yours and rightfully so but 50% of those undergoing transplant get some form of it but that doesn't mean it wont go away. Your son is in an age group much different than what we are used to seeing on here so it might help to find support from those with a similar scenario as yours. Younger patients seem to do much better.
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sbk007,
Thank you for your response.
Yes, I am very concerned. Terrified about so many things. My son is a young adult, very very healthy except for the SAA. A wonderful person. I guess I know enough about gvhd to be scared but not really enough to be well informed. We get different statistics from every doc we see. When we were in the hospital for ATG, 2 patients on our hall that had 10/10 MUD transplants died of gvhd. Both were older, both had Leukemia.
Can you tell me more about gvhd: I know what side effects can happen but not how severe, not what it is really like to live with it, does it typically go away after 3 years or does the gvhd that develops during the first 3 years post transplant go away??
Second question:
Friday night I talked with a doctor from John Hopkins. Wow, she is a kind, understanding, and very concerned doc. I was impressed. I called them because of info I've read on this forum. They are using Cytoxan day 3 and 4 post transplant to decrease gvhd and having great results. She said they also place a priority on haplo matches from family over MUD transplants. Does anyone have experience with this?