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Old Thu Oct 21, 2010, 09:53 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Good place to vent!

Hey Julie!

I was on the webinar today, too, with you and Linda. It IS good to get stuff out there. I'm glad to hear you have a donor.

The family thing is tough. This is a weird disease that almost no one knows about, so, when you get it, no one knows how serious it is unless you tell them -- unlike, say, lung or breast cancer, which everyone is familiar with. But it's hard to explain how serious it is without worrying about scaring your family -- or sounding like a whiner.

I like to give family members copies of the LLS book on MDS and ask them to read it. When they get to the life expectancy part (even though it's overly pessimistic because it's based on just supportive care) that usually wakes them up to the seriousness of things.

Are you working as a vet or vet tech? or some other kind of animal care?

Hang in there!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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