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Old Sat Apr 6, 2013, 10:28 PM
Scarlett O. Scarlett O. is offline
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Join Date: Mar 2013
Location: Canada
Posts: 6
Question Normal BMB but poor prognosis cytogenetics

Just before Christmas 2010 my GP referred me to a hematologist for a BMB because my CBCs showed that I was mildly pancytopenic, and she had ruled everything else out - iron and B12 deficiencies, multiple myeloma, lupus and rheumatoid arthritis. From looking at the blood smears under the microscope, both doctors thought that everything would come back normal, but that's not how it turned out. While the BMB showed "not a hint of morpholology", the cytogenetic results were terrifying - Chromosome 5q and 7q deletions in 6 of 20 metaphases. I'll never forget how the hematologist put it to my husband and me two days after Valentine's Day 2011. He said: "You don't have MDS yet, but when you get it, it is incurable except for a bone marrow transplant, and 30 percent of people die during transplants." Wow! The treatment plan is to watch and wait and have CBCs every four months. I don't have to have another BMB unless/until my hemoglobin is 100 and/or my platelets are 50. More than two years have now elapsed, and my blood counts remain borderline but stable. Most recent CBC results were WBC 4.1, Hgb. 117, Platelet 117, RBC 3.86, and Hct. .353. I am almost 60 years old now, and I have spent the last two years checking off a lot of things on my bucket list - travelling extensively and spending more time with the people I love. I really thought I would be very sick by now or maybe even dead, but thankfully my only symptom is what brought me to the doctor in the first place - extreme fatigue. I am okay physically, but this has taken a huge toll on me psychologically. Essentially after two years of watching and waiting, I still don't have a diagnosis - not that I want one because I already know that with those "terrible chromosomes" (another direct quote from my hema), my prognosis is not good. I have been lurking on this site for well over a year looking for a story like mine, but I haven't found one. Were any of you ever in this situation, and what happened to you? Thank you in advance for any information and support you can provide.
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