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Hi there Peter,
Wow... are you in Victoria, Australia? Cool. I've been doing really well in the past 10 years or so, living normally with a dip in my counts every now and then, but no transfusions. I was on Cyclosporin for about 5 years. But have been treatment free after that for all these years until now.
Last year my platelets started to go down but my Dr didn't seem worried (averaging platelet count about 60-80). But this year they have dropped to stay in the 20s and because of my AA history, they did a bone marrow biopsy. They found some cytogenic abnormalities and diagnosed MDS. Because of my former treatment for AA I'm not eligible for any clinical trial drugs to help me. The only known cure is BMT, and because of my age and good health I am a perfect candidate. And they've recently found me an unrelated matched donor. So I am planning for transplant sometime in the next few months, in Brisbane where my family are (Mum and Dad).
Thanks for asking!
Jules
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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