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susan01's Recent CancerCompass Activity

  • susan01 has replied to a post on the message board

    Also  they  now said I have PV  not ET

    June 14 at 2:53 PM view post
    • susan01 has created a new message board discussion

      I was told at first  that I had ET   I have a jak 2  Gene I have been on hydrea  for almost 10 years now   1 a day  my platelets  go up and then  go down   I was taking them mon to fri   now  i take them mon  to sat   Last time I went they were normal   then  saw the doctor last week and they were 699 so  he didnt seem too be too concerne...

      June 14 at 2:52 PM view discussion
      • susan01 has replied to a post on the message board

        I really feel for her  it has to be so hard for you also with this disease  it does affect the appetite   it seems to kill tastebuds  and affects digestion, and sweets seem to be the most satifying which is not good  for weight    I hope and pray she will get better maybe it takes time to her body adjusting to being off the medicine    The winter doesnt help...

        March 25, 2014 view post
        • susan01 has replied to a post on the message board

          How is her thyroid  have you had that checked  I still take the hydrea  and at first lost weight now i have gained it all back but that could be metabolism  and i am much older  also   I know its very frustrating when it comes to gaining  that amount makes a big difference on clothes and if she is sad she may eat more.

          March 25, 2014 view post
          • susan01 has replied to a post on the message board

            Thank you    Its  good compare notes  and yes it did help  I am 68  and feel the same way  and probably  will be on the hydrea  for the rest of my life  unless they find  a cure or a way to control the JAk 2  gene Thank you again

            February 20, 2014 view post
            • susan01 has replied to a post on the message board

              I just have question for Barry Are you still taking Hydrea  and  if so  what dosage and how often?? Thank you

              February 20, 2014 view post
              • susan01 has replied to a post on the message board

                I have been on hydrea  for going on 3 years  I have no choice it keeps my platelets  lower than  a million  and I am over 65  so  i am on 500 mg  the lowest  every other day   my last count was 759 i think   it goes between 550 and up  if it goes higher i may end up taking it every day again  i was every day  for about a year now every&nb...

                February 19, 2014 view post
                • susan01 has replied to a post on the message board

                  Thank you so much for posting these videos  its very helpful  and it is good that they are doing  more  research for ET   I hope and pray that they find a cure  or a way to control platelets especially for all the young people who have this disease   I am 68 so  I  dont know if it will happen in my life  I am taking hydrea   but getting  ...

                  December 19, 2013 view post
                  • susan01 has replied to a post on the message board

                    My hair got thinner also  but I am also older but Hydrea  can  cause hair loss   I  tried Wen products and  they really work  for thinning hair I found them on QVC  its worth trying  they have different kinds  just a suggestion   he uses only natural products which i like no chemicals

                    December 02, 2013 view post
                    • susan01 has replied to a post on the message board

                      I am so sory you had a stoke  omg  you are so young  I am also over 60  and  i take  hydrea  also  I have been on it for a while  i did have side affects but the smoothed out and now  i am just used to them  my platelets go up and down  i am on 500  every other day  I had my count on monday and they went for 503  to 680  so i go back in t...

                      December 02, 2013 view post
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