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MDS Myelodysplastic syndromes

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Old Fri Jul 4, 2014, 05:30 AM
Julianna Julianna is offline
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Join Date: Feb 2010
Location: Victoria, Australia
Posts: 184
Unhappy Bad fevers & lots of "I dont know"s

Hi, haven't been here for a while. My MDS looks like a low platelet count (strangely shaped) and I've been having really bad fevers a couple of times a year. With fevers Hb drops ( I heard is common) my platelets increase & it just leaves me feeling really exhausted & I'm still waiting for my Hb to catch up.

I get paranoid about feeling too hot or too cold. Is this gonna be my life now? Fevers with no reason & a week or 2 in hospital. Hard to get my head around it. I think my hematologist wants to try GSCF injections. Hoping it may work.

Does this story ring true to anyone out there?
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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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