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Old Mon Jul 25, 2011, 09:41 AM
Alice P Alice P is offline
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Join Date: Oct 2010
Location: Maryland
Posts: 28
No Exjade

Celebrations -

My husband is unable to use Exjade. It is not for those who have high-risk MDS or whose platelets are below 50,000 (both of which describe John). So the wheatgrass is the only chelator we've tried. I can't prove that it was what lowered his ferritin level, but I can't imagine what else would have caused the decrease. His hematologist was previously unaware of the chelating properties of wheatgrass, but he was supportive of our trying it and is enthusiastic about the results. We have a three-month follow-up appointment at NIH tomorrow. It will be interesting to get their take on John's ferritin levels.

Alice
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Alice, wife of John, diagnosed MDS RAEB-1 5/10. Tried Vidaza, ON 01910.Na (at NIH), & Vidaza + Revlimid with no effect. Progressed to RAEB-2. Supportive care only from 9/2011 until death 1/26/12.
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