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Old Sat Aug 22, 2015, 12:24 PM
PaulS PaulS is offline
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Join Date: Sep 2014
Location: New York
Posts: 247
Hi LeAnn,

Sorry you have to deal with MDS -

I'm 56 and started out with low RBC - and otherwise mostly oK counts about three years ago - watched and waited for a couple of years but RBC's gradually declined - tried Aranesp for maybe four or five times but it didn't produce any results - RBC's were still not that low so we continued watching and waiting. Eventually RBC's got much lower and platelets started falling too - tried low intensity Vidaza for four or five cycles - again no results other than making platelets fall even lower - stopped that too. Counts continued to drop and became transfusion dependent - at least two units once a week. My Hemoglobin has gotten as low as 5. At that point docs decided transplant was the best way to go - and I"m now scheduled for one in September...

I didn't really experience side effects from either Aranesp or Vidaza - other than soreness at the Vidaza injection site - taking an anti nausea drug is a good thing to do with Vidaza - along with some fibre (prunes worked for me) - otherwise the drug wasn't so bad and it can have great benefits for some people. Hopefully it will work well for you.

Best wishts,
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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