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Old Wed Nov 16, 2011, 07:05 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Sophia,

The subject of iron overload and chelation is extremely controversial among MDS experts. As one of my NIH doctors said, "Where there is not good data, there are lots of very strong opinions."

Exjade, which seems to be the drug of choice for chelation, is outrageously expensive and, as Marlene notes, potentially hard on the kidneys (and the eyes). But lots of docs feel there is good evidence that iron overload can harm the liver, the heart, and other organs.

There's lots of research that attempts to demonstrate the danger of iron overload and the positive effects of iron chelation (much of it funded by the maker of Exjade).

So, it's a tough call, and may depend, to some degree, on the age and prognosis of the individual patient. A younger patient receiving transfusions may face the prospect of many years of increasing iron, while that may not be as likely for an older patient.

Many folks on marrowforums are using or have used Exjade. Some are trying wheatgrass juice as a natural chelator.

If your Dad is having RBC transfusions, his ferritin will likely continue to climb with each transfusion. It's probably worth having a conversation with his hematologist about the iron overload issue to see where he stands on the issue -- and why.

Take Care!

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

Last edited by Greg H : Wed Nov 16, 2011 at 07:07 PM. Reason: added a word
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