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Old Fri May 11, 2007, 03:08 PM
Tom M Tom M is offline
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Join Date: May 2007
Posts: 36
Be your own advocate

Hi Helene,

It is important that you act on your own behalf and learn as much as possible about bone marrow failure. This enables you to ask the right questions and points you in the general direction you must go. Marlene had some great suggestions as a place to start.

My worry is exactly how low are your counts....your hgb(hemoglobin) and hct(hematacrit). It is possible if you are feeling very tired and maybe suffering from shortness of breath with slight exertion, you may need a blood transfusion. Your general practioner can order the necessary blood work and get you transfused, if your bloodwork results warrant it.

As for resources in Chicagoland, I am not familiar with any of them. I did do a google search and came up with Rush University Medical Center. It appears they do bone marrow transplants, so they should have a clue as to your present situation.

Other sites to check: www.aamds.org or www.cancer.gov. This is a start and I hope it helps.
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Tom, age 56, diagnosed with MDS RAEB Oct of 2006. Previously treated w/ vidaza, unsuccessfully. Revlimid successful 1 year. Progressed to AML 4/08 w/ 20% blasts, now in remission. BMT to take place 10/08.
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