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CindyN's Recent CancerCompass Activity

  • CindyN has replied to a post on the message board

    Alex, seem's like your dealing with Dr's who don't know much about ET. It's very rare it develop's into leukemia. You can live a long life with ET. Most patient's until age 60 are treated with a aspirin. My daughter dx at age 13 with platelet's going high as 2.8 mil.  She is on no med. and her platelet's range 1 mil - 1.8 mil. She has Von Willebrand so no aspirin, it causes bleeding, have you been checked for th...

    August 13 at 1:41 PM view post
    • CindyN has replied to a post on the message board

      Barry, Thank you for the post, it is nice to hear from someone who has lived a long time with ET and had no major problems, with my daughter being dx so young (13) it make's you worry about all the problem's she will have. Her platelet's stay around 1.5 million and she is on no medicine. She has headache's and fatigue. Thank you again for the encouragement!

      July 11 at 5:42 PM view post
      • CindyN has replied to a post on the message board

        I think he mean's symptom's like blood clots, major things.

        June 14 at 2:23 PM view post
        • CindyN has replied to a post on the message board

          My daughter's Dr at Mayo said treat symptom's not platelet count. Her platelet's have been as high as 2.8 mil. and she is not on any med. They now range 1.1-1.5 mil. She developed Von Willebrand and so she can't take aspirin, more worried about bleeding then stroke.  I think it depend's on your age as to whether you go on HU. Dr. Tefferi is her dr. and I think over 60 is when you may need it.  Her main issu...

          June 14 at 2:20 PM view post
          • CindyN has replied to a post on the message board

            My daughter is 22 now, dx at 13. Her platelet's range from 1.5-1.8 mil.  She has also aquired Von Willebrand so no aspirin. She take's no meds. When she was 15 her Dr. at Wake Forest put her on HU because her platelets were 2.5 or better. That was for three yrs. and I didn't want her taking something for the rest of her life.  Took her to Mayo and Dr. Tefferi took her off HU.  She has done great and ha...

            May 09 at 1:33 PM view post
            • CindyN has replied to a post on the message board

              When I flew my daughter there it took one day for everything, if you schedule a appointment and let them know your coming from a far distance. Did her bloodwork early in the morning and had her record's sent in advance. He saw us that afternoon and took her off HU slowly. Your Dr. where you live can keep in touch with them.

              February 05 at 2:58 PM view post
              • CindyN has replied to a post on the message board

                I agree, I went from Va to Minn. to him.

                August 23, 2017 view post
                • CindyN has replied to a post on the message board

                  If you have Von Willebrand you are more apt to bleed then clot. That is why she doesn't take aspirin. Your onogologist/hemotologist should know to test for this. A lot of people with ET develop Von Willebrand.

                  August 22, 2017 view post
                  • CindyN has replied to a post on the message board

                    My daughter was dx at 13 also, she is now 21 on no meds and doing fine. Her platelets were 1.5-2.5 for years. She was on HU for 3.5 years and I took her to see Dr. Tefferi at Mayo Clinic in MN at he took her off all meds. She has developed Von Willebrand so cannot take aspirin. Dr. Tefferi believes in treating symptom's not platelet count. We just see a local onocologist and she keeps Dr. Tefferi's office informed. W...

                    August 22, 2017 view post
                    • CindyN has replied to a post on the message board

                      I would consult a doctor who has experience with ET, or one that is a expert on erosive gastritis. Wouldn't aspirin hurt you if you have gastritis? My daughter's platelet's high as 1,800,000 and she didn't take aspirin or anything for years and is fine. Everyone is different. Get second opinion's.

                      May 25, 2017 view post
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