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Viewing 10 posts - 1 through 10 (of 10 total)
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  • March 25, 2018 at 11:25 am in reply to: MDS Center of Excellence in NJ #35997
    Rich
    Participant

    Joanne, I am now with Dr. Dale Schaar. After reaching out to the AA-MDS Foundation and the MDS Foundation here, he is the leader in the field for our area at Rutgers. Dr. Schaar, on my first visit sat with me and went over EVERYTHING in detail for two hours. He not only covers every possible topic related to your condition but also will tell you why he asking certain questions and actually educates you. At Sinai, I would get a nurse practitioner or other doctor and for the last 2-3 minutes my oncologist would pop his head in and say, let’s have you come back in a month or two. I hope this helps and keep me posted!

    March 7, 2018 at 12:01 pm in reply to: MDS Diagnosis? #35908
    Rich
    Participant

    Thank you Lyssa. This tells me a good deal more.

    March 7, 2018 at 5:31 am in reply to: MDS Diagnosis? #35904
    Rich
    Participant

    As an update, more results show a “copy neutral loss of heterozygosity” of the 5q Gene. CN-LOH of the long arms of chromosome 5q is recurrent abnormality and in MDS it may be associated with adverse survival. What does this mean?

    March 2, 2018 at 7:01 am in reply to: MLL Gene #35891
    Rich
    Participant

    Thank you Barb, great articles. My original doctor (Hoffman) at Sinai specializes in MPN so I will look for another in NJ at one of the centers for excellence. Do you recommend anyone in NJ I can seek out?

    February 14, 2018 at 10:05 am in reply to: MDS Diagnosis? #35779
    Rich
    Participant

    So you are hypercellular as opposed to hypocellular. Yes, very confusing and to wait another month for more guessing is hard to take. Thank you Allan.

    February 14, 2018 at 9:12 am in reply to: MDS Diagnosis? #35777
    Rich
    Participant

    Should I be concerned that I am 40 and I’m moderately hypocellular at 30-40% when I should be around 60%? This combined with low WBC erythroid megaloblastic changes and megkarycoytic dysmorphic features makes me wonder after research what I am facing.

    February 10, 2018 at 10:43 am in reply to: MDS Diagnosis? #35759
    Rich
    Participant

    Does anyone else similar results as mine mentioned in my original post? I feel like 4 months later I should have an answer, right? Are my levels, symptoms and BMB something that anyone had experienced?

    February 10, 2018 at 9:33 am in reply to: MDS Diagnosis? #35758
    Rich
    Participant

    Thank you Emily. I’m currently under the care of Dr Ron Hoffman at Sinai. I’ll make a call

    February 6, 2018 at 8:37 pm in reply to: MDS Diagnosis? #35729
    Rich
    Participant

    Haider,

    I too am confused. I posted my results and I do not have answers when I started a post on MDS diagnosis. Any thoughts?

    February 6, 2018 at 8:35 pm in reply to: Confused about MDS ? #35728
    Rich
    Participant

    I’m in the same boat..I posted earlier in the week and I can’t find answers.

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Viewing 10 posts - 1 through 10 (of 10 total)

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