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mistyjade's Recent CancerCompass Activity

  • mistyjade has created a new message board discussion

    Dear Friends who Share Ess. Thrombocytosis, I am sorry to report to you that after 17 years with E.T., I had a stroke Saturday night.  And I'm reporting it because of a bizarre thing that instead of my "normal" 750,000 platelets, my count was actually downto 200,000.  Yet, I formed a blood clot that went into my brain.  The stroke's symptoms lasted for 5 hours (numb left arm, tingly L. hand, speech pro...

    August 21, 2018 view discussion
    • mistyjade has replied to a post on the message board

      Hello Jacqueline, and welcome to the message board! While it's scary to be diagnosed with any disease, including E.T., it is not "that scary" a disease itself.  My hematologist said it is NOT cancer...but a relative of it.  Can you live a long life? Yes! As you read the messages on this board from others with E.T., you'll see we're living long and pretty uncomplicated lives.  What's "scary" is that it'...

      May 27, 2018 view post
      • mistyjade has replied to a post on the message board

        Dear Isolinjj, If you read through all the messages posted, you'll get a good idea of things that have worked for other people.  I've learned through their messages -- and it's worked for me -- that pomagranate juice (like POM) is excellent, along with taking turmeric cucumin capsules. I was lax taking my hydroxy urea capsules this winter; my platelet count went up considerably; so I'm being faithful going back ...

        March 26, 2018 view post
        • mistyjade has replied to a post on the message board

          Dear JJ...Sorry for the late reply to your message back in October, but I've had enough trouble with my laptop that I purchased a replacement one today. Two items that you can add to your diet, which help a lot, are drinking POM brand juice and take turmeric capsules.  I've tried a lot of 'red' juices and juice blends, but since my local Aldis now carries POM brand pomegranate juice for $2.89 a bottle, that's al...

          December 08, 2017 view post
          • mistyjade has replied to a post on the message board

            Dear Tinkletops (!!) ~ Thank you for sharing your encouraging story with all of us and your positive outlook. To all of the younger people with this disease on the message board, you are very inspiring. (And to us 'oldies,' too). Best of luck as you continue your journey with this odd disease.

            September 14, 2017 view post
            • mistyjade has replied to a post on the message board

              Dear Generic00, I'm sure I speak for the many people on this message board that we are all sorry for the loss of your adult child. It is a tragic truth: parents are not supposed to bury their children, and only another parent in your situation can fully understand your grief.  Please accept my condolences, and others online, not only for this untimely death, but that no doctor ever prescribed a treatment.

              May 04, 2017 view post
              • mistyjade has replied to a post on the message board

                Dear AllyT77, Welcome to this wonderful message board with some very kind people who all share a diagnosis of E.T., and are all ages.  First of all, PLEASE do not be nervous about tomorrow's appointment.  Some center for rare diseases rates E.T. as rare (1 in 30,000 occurrence) but you CAN have a normal life span.  When I was diagnosed with it from a pre-op blood test, my count was 1.3 million and the ...

                December 28, 2016 view post
                • mistyjade has replied to a post on the message board

                  A diagnosis of E.T. is defined by some in the medical field as being rare, and to have you at only 10 when diagnosed, that makes you a double rare person with it.  I'm glad to read that you find "it gets a little fun sometimes" because it should! You are a rarity indeed! And glad you're in a medical study. Any information that can be learned about your experience will help others with it in the future.

                  December 28, 2016 view post
                  • mistyjade has replied to a post on the message board

                    Dear Mandym80, thank you for explaining about the ministrokes. I'd only heard about them in older, older people, and I know my late husband had some about 11 mo. before he died at 74 after 12 years w/Alzheimer's (he's in Heaven with a new mind and with his first wife, so all is well). You are the first person I've heard or read about with them with E.T., so good to know it's possible. The 2 large clots I had (left cl...

                    December 27, 2016 view post
                    • mistyjade has replied to a post on the message board

                      Dear Mandym80, thank you (!!) for joining the discussion. We have young people on the message board with new diagnoses of E.T., but never anyone as young as you when diagnosed. 10? That is amazing, since everything I've read says people usually get this later in life...as in their 60s.  May I ask if your ministrokes in pharmacy school had a "clot" element to them? That's my biggest concern after 4 episodes in 15...

                      December 24, 2016 view post
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                      About mistyjade

                      Survivor
                      Other Cancer
                      Alternative Treatments, Diet, Naturopathic Medicine

                      I have had essential thrombocytosis for 11 years. It's weird because it's in the leukemia "family" of diseases, and I've taken daily oral chemo for 11 years, but I'm not considered a cancer survivor. I would like to hear from others who have E.T.!

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