MDS is a bone marrow failure disorder
MDS is a blood cancer
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  • in reply to: New Member – Low Risk MDS #46317
    Richard Macgurn

    Hi Chris
    Don’t seem to see how to send a PM? Do you mind if I ask when you were diagnosed? Where were you blood levels then and now?

    Besides a clean healthy diet did you try anything else?

    in reply to: New Member – Low Risk MDS #46306
    Richard Macgurn

    Eric, Patrick & Stacey
    Hello I’m recebtly diagnosed medium risk MDS, first in Costa Rica then Piper CAncer Center then Mayo Clinic. Originally I was called high risk with 10-15 blasts, but last two BMB show 2% or less blasts. In Costa Rica I got a transfusion of Red and Platelets. Also a few shots of nupogen as my WVC are sub 1.3 with almost no neutrophils. Last test at mayo hemoglobin 9.8, hematocrit 30%, neutrophils .26, leukocytes 1.6, lymphocytes .86 and the rest all below minimums. Yet no fresh blood for me. With two chromosome issues 12p and 20q, and all three blood lines severely depressed I’m medium risk. Also BMB showed moderate fibrosis in my bones?

    I’ve been offered Vidaza (3-5 years if hekp they say), and Mayo a stem cell transplant but so far done nothing more than diet change and tons of suppliments and cancertutor remidies.

    My issue is I’m a single 66 yo dad with a 7 year old son raising alone. I’m trying to find a solution to get him to 18, than it’s up to god.

    Have any of your tried any alternative things like Vit C, layatril, Gc-Maf, ozone etc? Mayo has me on a monthly blood review but has done the genetic match to look for donors. They told me 50/50 I’d make it as the odds for over 65.

    Also these last weeks my weight has been dropping more was 192, in sept ‘18, now 176. Yet I’m eating a lot at least as much as before just wat more green veggies, no pasta or bread or sugar and sweets. Exercise was 4x a week at gym now it’s 2x at home.

    Richard M
    Phoenix Az

    in reply to: New MDS Patient #45119
    Richard Macgurn

    Hello all. I was diagnosed in nov 2018, aside from 1 bag of platekettes and of red cells I’ve had no meds. The transfusions were done as my wbc was 1.4 and plateletes at 9.4. I also did 3 shots of nupogen yo boost wbc count. Then I flew off to Arizona and went first to virgina piper cancer center. They redid bone biopsy and found blasts at sub 5% in marrow none in periferal bloood. Since first biopsy in Costa Rica showed 10-15% blasts there was confusion. So I went to a COE Mayo Clinic and there they did biopsy #3. This showed blasts under 2% and two chromosomes missing 12p and 20q In marrow stem cells. But they say I’m low risk so we waiting more test results. One hospital wants me to start Vidaza a week a month forever (5 years they say) but Mayo says doing nothing means 3-5 years.

    So I’ve started looking at other options like Gc-Maf, Coleys Toxin, dendritic cells,high dose infusions. Anyone out there had any successs with Alt medicine on MDS?

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