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Viewing 15 posts - 1 through 15 (of 33 total)
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  • in reply to: Most Recent CBC Shows Further Deterioration #57973
    Roderick McCune
    Participant

    Hi Eric,

    Sounds like you are doing well. I have mild MDS since 2012 found on routine blood work. My numbers are as follows:

    WBC:3.1
    RBC:4.1
    HGB:11.9
    Platelet:147

    I have been asymptomatic and living a normal life. I walk daily and try to eat healthy. I am thankful for each day, and I try not to think to far into the future. My oncologist thinks I will become symptomatic next May. I hope he is wrong, but we’ll see. Hope this helps and you don’t feel alone in this

    Rod McCune

    in reply to: IPSS and WHO scoring system #56702
    Roderick McCune
    Participant

    I have no symptoms at all, just abnormal CBC.

    in reply to: IPSS and WHO scoring system #56685
    Roderick McCune
    Participant

    I understand your anxiety regards MDS. I have had some on and off. I am currently taking Celexa for periods of anxiety and it seems to help. Sincerely, Rod

    in reply to: IPSS and WHO scoring system #56644
    Roderick McCune
    Participant

    I have been diagnosed August 2020. I have had WBC 2.9 and Platelet 147 and Hgb 13.5 since 2012, but my regular doctor never referred me to an oncologist. I got a new general practitioner in 2019 and she referred me to my local oncologist here in Norwalk, Ohio. He saw me in August of 2020 and gave me the news of my mds diagnosis. I currently see Dr. Tim Adamowicz in Norwalk, Ohio. I am on watch and wait for now. He thinks I will become symptomatic in the next 1.5 years, but if my abc holds longer so be it. I am not yet going for center of excellence which is Cleveland clinic until my future changes more. I hope this gives you encouragement and God be with you all. Sincerely, Rod

    in reply to: IPSS and WHO scoring system #56506
    Roderick McCune
    Participant

    My oncologist says mild mds patients can live for decades. I know it is difficult to know for sure, but I am trusting in the God who made all things including me to sustain me through this disease. I have to remind myself that I am only in control of my attitude and not my health. We can pray for each other Joe. Sincerely, Rod

    in reply to: Bone Marrow Transplant Success #56389
    Roderick McCune
    Participant

    Thanks for sharing Rosalyn. Glad the transplant worked for 18 years, but sad to hear of the return. Hope the approval for Luspatercept works. God bless Rod

    Roderick McCune
    Participant

    I have had abnormal WBC and Platelets for 10 years now. Only recently has my HGB fallen some to 11.9, but a recent draw showed 13.1. My oncologist thinks I will become symptomatic within 1.5-2 years. I hope this gives you encouragement Joe.

    in reply to: Medicare part d plan #56387
    Roderick McCune
    Participant

    Thanks Lisa for your input

    in reply to: Medicare part d plan #56380
    Roderick McCune
    Participant

    Thanks Kathleen and Cliff. I appreciate your guidance. Glad to hear there is help down the line when I begin treatment.

    in reply to: Bone Marrow Transplant Success #55051
    Roderick McCune
    Participant

    Thanks Sue for sharing your story. My oncologist is not a big fan of transplants, but when I get to the point where I feel I need a second option I will go to Cleveland Clinic. I have been asymptomatic for going on ten years but recently my Hb is beginning to decrease. I am learning to not take life for granted.
    Rod

    in reply to: Bone marrow transplant for low risk MDS? #55045
    Roderick McCune
    Participant

    Michael, are you on any special diet? Roderick McCune

    in reply to: Bone Marrow Transplant Success #55044
    Roderick McCune
    Participant

    Sue,
    Would you go through transplant again? Was it tough? How old were you at the time of transplant?
    Rod

    in reply to: Bone Marrow Transplant Success #55043
    Roderick McCune
    Participant

    Sue,
    Glad to hear of your transplant success. I have mild mds so for now no transplant. I am on watch and wait till then. My oncologist predicts I will become symptomatic in 1-2 years as Hb slowly dropping. I have included transplant as a future hope for cure in case things get worse. My problem is age is not on my side as I am 70 currently so no telling how old I would be when my symptoms become worse.
    I think your transplant story is encouraging and I hope it gives others hope. Thanks for sharing. Rod

    in reply to: Bone Marrow Transplant Success #55040
    Roderick McCune
    Participant

    Thanks Sue for your help on this

    in reply to: Bone Marrow Transplant Success #55029
    Roderick McCune
    Participant

    Last question Richard. What does LLS refer too?

Viewing 15 posts - 1 through 15 (of 33 total)

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