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Old Wed Jul 11, 2012, 08:41 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Quote:
Originally Posted by Anne Yeomans View Post
Hey everyone:

I am involved with Moffitt awaiting a BMT. My doc here in WPB as well as Dr Lancet and Dr. List from Moffitt. There believe is that the treatment for iron overload is more damaging than the iron overload. They really don't do anything. They have not know anyone to die from it. Kinda watch and see. Anyone got anymore info on this?

Anneg
God Bless
Hi Anne!

That's really fascinating! Given the stature of Dr. List, you've got to take his opinion seriously. I know there is considerable debate among docs about whether treatment for iron overload in the MDS is worthwhile, but I've never heard of anyone arguing that the treatment is actually harmful. There are some potential side effects, of course, like with most of the drugs we wind up taking for this disease.

My local doc was skeptical of chelation, based on the research he'd read. And my docs at NIH were also not big believers in it either, until I got up over 5,000 and my transfusion interval wasn't going down. Then they actually insisted I start chelation.

Gramous is right that reducing iron is more important for younger patients or those with longer life expectancies. No one (as far as I know) questions the need of thalassemia or sickle cell patients in their 20s to have chelation.

Maybe you can ask the Moffitt docs what they mean about the treatment being harmful, so we can figure out if they are just worried about the potential liver, kidney, hearing, and vision side effects or if they know something else that we need to know about.

Good luck down 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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