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#1
Wed Apr 4, 2012, 01:24 PM
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New- Looking for help!
Greetings... I am new to this forum so please bare with me... My mother who is 75 yrs old and active and healthy for her age had been having bone marrow problems for 3 years now. For the past 3 yrs she had blood transfusions every 4 to 6 weeks because her bone marrow is suppressed for some reason and does not make new blood. She has had 4 bone marrow biospys showing nothing except her bone marrow seems to be healthy but just not produce new blood. Recently she was told her platelets are now at zero and the drs are not sure why... has anyone out there been thru something like this or know of a good place to contact for info.
I would appreciated any advise . Thank you Jul 
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#2
Thu Apr 5, 2012, 10:02 AM
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Hi Jul,
Welcome to the forums! Sorry to hear about your mother. I see you are in NY. I don't know if you're near the city but you might try getting a second opinion from a blood disorder specialist at Sloan-Kettering if you haven't already. Karen
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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#3
Thu Apr 5, 2012, 11:06 PM
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A resource that I have found most helpful is the Aplastic Anemia/MDS organization: www.aamds.org. You won't get a diagnosis there, but a better understanding of bone marrow diseases.
sue
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Sue, age 72; Dx 6/2010 MDS Int-2. Revlimid unsuccessful, began Aranesp 10/2010; additionally Dx PNH 2/2011, Soliris added 3/2011. ATG 5/2011, Cyclosporine 5/2011. Nplate 10/2011 to 10/2012 . Exjade began 12/2013 due to high ferritin level, discontinued 3/2014 because of increase in creatinine.
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