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mokey's Recent CancerCompass Activity

  • mokey has replied to a post on the message board

    Hi , I am from Jersey also. Check out my post to Johlon. I have Jak2 mutation. That just confirms diagnosis and doesn't change things. Try the phlebotomies before Hydroxy. Top doc for this in country took me off it. Would suggest you have consultation with Dr. Jerry Spivak at Johns Hopkins University Hospital in Baltimore.". He has studied this disease for more than 20 yrs. It is less than4 hrs fro...

    July 25, 2016 view post
    • mokey has replied to a post on the message board

      hi Jolan, I have had PCV for 10 yrs. Was put on Hydroxyureea for several years and didn't like it so went to top expert for PVC i. He is at Johns Hopkins University Hospital in Baltimore. He took me off kHydroxyurea and ordered Phlebotomies every two weeks to get my count down. Then went to every two months or as needed . Have not needed one no,w for over 6 months. My hair grew back and I do...

      July 25, 2016 view post
      • mokey has replied to a post on the message board

        I also take .81mg aspirin. I had slightly high rbc counts for 10 yrs prior to being diagnosed. I am also female.

        February 26, 2016 view post
        • mokey has replied to a post on the message board

          Interesting to hear you have hard itchy hives. I get them sometimes. I have been diagnosed for three years and started on hydroxy but went to see top specialist last year who said I didn't need it. He ordered phlebotomy every two weeks for a few months now I haven't needed one in six months. I feel very well and I am in my mid 70's. I live a normal active lifestyle try to drink a lot of water and I don't eat ...

          February 26, 2016 view post
          • mokey has replied to a post on the message board

            dear chelle3 I have had pv for two years. Live in North Jersey and have been treated at HUMC and given hydroxyurea varying doses depending on blood reports. Recently went to well known expert at JohnsHopkins in Baltimore. He reviewed my blood test for the past 10 yrs and said I should get off hydroxyurea and not take vitamins or supplements and should just have phlebotomy monthly until I get to 42 ...

            March 26, 2015 view post
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