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Old Fri May 20, 2016, 01:56 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Quote:
Originally Posted by john e View Post
I was diagnosed with mds 4 years ago and I have been on a wait and see!
My platelets have slowly dropped in that time form 110 to 91 6 months ago.2 months ago i had a drop to 71. Today while being treated by my family doctor for separate issue, my blood work showed my platelets dropped to 40. if this rate of platelet drops continues I imagine it will not be long before I am faced with platelet transfusions. My question how long can one continue to receive transfusions before they become in affective ?
The scary thing about platelet transfusions is that no one can predict when you may become refractory to them and not get any boost. My doctor told me that some people become refractory with only a few platelet transfusions while others can go for a long time. Some centers will do HLA matching for platelet transfusions, others will use large pools of different donors in attempt to decrease the odds of becoming refractory.

I would recommend using this time to get a second opinion. The drop to 40 is concerning without a good explanation (like a recent virus or infection). Do your platelet numbers only go down now, or do you see them recover at times?
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent

Last edited by Hopeful : Fri May 20, 2016 at 10:19 AM.
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