Quote:
Originally Posted by Relentless Against SAA
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?
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I had a mini Haplo at Hopkins in April, my sister as donor (I'm 31, she was 26). I did not have a very good registry match. I was a relapsed leukemia recommended for transplant. (Found the forum looking for iron overload issues). I had two days of cytoxan on days +4and+5. I've had some mild skin issues. I have topical steroids to deal with it. It flares a bit if I'm not as careful as I usually am with sun exposure. Other than being slightly itchy at times I don't really notice it. My doc is happy with it. He likes some mild gvh as it should lead to GvLeu if there is any residual leu.
You do have the regular transplant risks from infection. I did deal with a round of that, before engraphtment. With no counts it is a luck game. I managed to go through all of my prior chemo without any major issues.
I do have some ITP issues after a viral infection that started about 5 months out. That just happens in some cases, doesn't seem to matter the type of transplant. A lady I know who had a full sibling transplant a year before I had my Haplo (also leukemia ) is dealing with something similar. My doc said it happens, but isn't too common.
Eta hopkins does quite a few haplos. Most of the people I was in clinic with we're haplos or full siblings. There were a fair number of YA and the older pop included.