MDS is a bone marrow failure disorder

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Trying to undertand MDS to AML

HomeForumsPatient Message BoardTrying to undertand MDS to AML

This topic contains 1 reply, has 2 voices, and was last updated by  Sherry Pratt 5 days, 5 hours ago.

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  • #34524

    tecsh
    Participant

    My husband was neutropenic for over two years and was treated with monthly neupogen shots. Several months ago his oncologist suggested he go to another more specialized oncologist who said he believed he had MDS but should have a bone marrow biopsy in a few months. September 28 his WBC was 1.3, RBC was 4.28, Platelets were 32 and his ANC was 0. His first oncologist told the new oncologist that my husband should have the bone marrow biopsy immediately which took place October 9 and both doctors agreed that he had leukemia. His blasts were 80% We went to MD Anderson October 13 for a 2nd opinion and that doctor confirmed that he had AML. They also said he needed a platelet transfusion before he boarded the plane. We flew home and the next day he had a fever and landed in the ER. That was a month ago today and he has never left the hospital. He has AML from undifferentiated MDS. After the pneumonia was under control they began 5 days of chemo. He didn’t have too many problems until about day 10 when he developed a fever of 104. They blasted him with various antibiotics and after several days, the fever subsided. He has received countless blood and platelet transfusions and today, day 23 after chemo, his WBC is 0.3, HG 8.1, Platelets 31 and ANC 0. They say he can’t come home until his ANC is .5 but he had a 0 ANC in June and he was at home then. His 14 day Bone Marrow Biopsy showed 29% blasts but the mass only contained 3% marrow. The doctor has been extremely uncommunicative. Initially we were told he would be in the hospital around 3-4 weeks. We were told that the first biopsy might provide information that would allow him to come home. Now they say the biopsy next week should be more definitive. What is the normal experience of an AML patient who originally had MDS?

    #34525

    Sherry Pratt
    Participant

    I had MDS for about 6 years before having a stem cell transplant. If you would like to email me, I can tell you more about my experience. Pratt8075@aol.com

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