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questions about new q5 detetion diagnosis

Home Demo forums Patient Message Board questions about new q5 detetion diagnosis

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    Mary Roth

    I’m 65 and I’ve recently been diagnosed with q5 deletion. My hemoglobin is 102 (that’s how it is measured in Canada, but I think that is the same as 10.2 ?) Can that level be causing my tiredness? Or, does it have to be lower to blame my tiredness on low hemoglobin? Also, can anyone tell me if my hemoglobin will continue to go down slowly, or, will it nosedive in the future?

    Michele Polland

    I have the 5q Deletion (also MDS with excess blasts-1). My platelets stayed in the 70 range for several years and has now dropped to the 35-45 range. Yes, MDS causes tiredness.

    Tom Nelson

    I am del5q identified (age 77) for 5 years. Hgb went from 14. to 10.5 when finally diagnosed. Yes tiredness was the 1st major concern and continues. Hgb now maintain at 8.4 with 2 different shots ( 1weekly, 1 Bi weekly). I work in spurts and can do most required daily tasks. Had to quit yard work. Had to quit choral singing. Am my wife’s primary care-giver so need to be active. Thank goodness no transfusions required yet. Del5q is slow moving.

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