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Old Tue Sep 27, 2011, 02:55 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi pvinod,

Have the doctor's run any tests for viruses (CMV, EBV, etc.) to see why your daughter's lymphocytes are high? Also, if your daughter hasn't had a BMB in 3 months, I would push for one just to make sure there are no increased blasts.

Unfortunately, no one can predict how long a person will be responsive to platelet transfusions. If your daughter is severely neutropenic and is requiring weekly platelet transfusions, she is in a very dangerous situation. I think you are wise to be *urgently* pressing the doctor(s) for answers or additional tests or treatments. The serious risk of infection or a spontaneous bleed are high. This is in addition to the risk of no longer being responsive to platelet transfusions.

I wouldn't judge the severity of your daughter's condition by how she looks. The unusual thing about this disease is that most people would never guess how sick you are by looking at you.
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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
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