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new diagnosis MDS-EB-1 w 5Q deletion

Home Demo forums Patient Message Board new diagnosis MDS-EB-1 w 5Q deletion

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    Jack Deutsch

    72 y/o male, hemoglobin dropping steadily for >10 years. Diagnosed MDS last week after bone marrow biopsy. 5% blasts. Cytogenetics showed 5Q deletion. Started Revlimid 10 mg. RBC ~8. WBC and platelets are dropping. I am told that 5Q is favorable; is that consistent with EB-1 and 5% blasts? My doc is local Brooklyn hematologist, highly regarded, but I think that I need a second opinion from a major med center. Appreciate any guidance and advice. Thank you.

    Jack Deutsch

    Correction: HgB ~8


    You are fortunate to be near quite a few Centers of Excellence. I would call, make an appointment, del(5q) is generally favorable but may not align with excess blasts, which is a separate category. There are lots of factors that determine treatment. You need to have everything explained to you.



    I suggest you see an mds expert at one of the many centers of excellence nearby. My initial diagnoses was 6% blast from local hospital and local hematologist. I went to center of excellence and saw an mds expert. Results were 1% blasts I’ve been on watch and wait for 2.5 years with no progression of disease. This disease tracks differently for each individual. Need a doctor with specialty in mds.

    Good luck.

    Lorraine Kozlowski

    Find an MDS Foundation, Inc facility near you. That’s whet we’re going to do.


    When I was first diagnosed in 2004 with 5q- MDS (no blasts), I saw Dr. Selina Luger at Penn Medicine in Philadelphia which is a Center of Excellence. She is a terrific doctor and extremely knowledgable about the disease. That might be about a 2 hour drive for you, and perhaps someone will give you a recommendation that is closer, but I did want to pass along her name to you in the meantime.
    Best of luck,
    -Stacey (age 48, started with 10 mg Revlimid, currently taking 5 mg Revlimid daily)

    Jack Deutsch

    Thank you all for your advice and support. I am in the process of seeking consultation with an MDS Center near me.

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