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MDS Myelodysplastic syndromes

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Old Mon Jun 9, 2008, 09:27 PM
Suzanne Suzanne is offline
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Location: Long Island, NY
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Unhappy Misdiagnosis???

I missed my mother's hem/onc appointment today because my son had a boat trip at school, I instead sent my dad. That being said I am getting second party information and am hoping someone can shed some light on this until I can get intouch with her doctor. Here it is:

She saw the doctor he marveled at how well she was looking, color back eating less ice, etc. She has been getting Aranesp injections once a week and taking 2 iron pills a day since her hemoglobin went down to 7.25. (Last week it was up at 7.9 and we thought everything was going fine) Anyway they took blood and the hemoglobin was at 7.5 and he didn't like the way the cells looked??? He took another blood sample from the arm at that point. Hemoglobin was at 7.6 and red blood cells were clumped (I am assuming he ment rouleaux formation but didn't use that term with my mom - he said clumping and stacking) something was mentioned about white cells being off and a third blood test was done. She is now scheduled for another bone marrow biopsy (just had one 5 weeks ago) next Thursday. Anyone have any idea what is going on here???? Does this sound like something MDS can do or am I looking at something else entirely? He also keeps stressing if she has chest pains, shortness of breath , headaches to GO IMMEDIATELY to the emergency room - why???
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Mom 69 diagnosed with MDS RA 3/08
TLK-199 started 7/17/08 - no response
Vidaza started 12/15/08 - no response
Dacogen started 01/10 - no response
Bone Marrow Biopsy 10/10 - 13% blasts
Bone Marrow Biopsy 12/22/10 - 45% blasts - AML
I have an angel 1/4/11
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Old Tue Jun 10, 2008, 11:31 AM
Birgitta-A Birgitta-A is offline
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Misdiagnosis

Hi Suzanne,
The blood test showed clumped red blood cells. That is not a specific symptom.
The white blood cell count was low. That can be dangerous because your mother can´t fight infections.
When the doctor stressed that she should go to an emergency room if she had chest pain and so on he was perhaps thinking of adverse reactions to Aranesp. If I was in your shoes I should call him and ask. Here is a link about Aranesp:
http://www.rxlist.com/cgi/generic/aranesp_ad.htm
Kind regards
Birgitta-A
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