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Hi Teo,
I had asked the doctor about Danazol a few months back, he said it was not the treatment for MDS, moreover it could cause some liver problems. But I still think that it will be less harmful than other approved MDS drugs, so I plan to ask him about it again.
My mothers ferritin showed 2600 at one lab and 3600 at another. The lab showing 3600 is more reliable so I believe that number. She has started on low dose chelation for now with Asunra(exjade equivalent).
Has your doctor considered Lenalidomide? It is for MDS and I think your mother does not have a confirmed diagnosis yet.
Hope Danazol brings about some good effect in your mothers case. Do keep us informed.
All the Best!!
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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