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CindyN's Recent CancerCompass Activity

  • CindyN has replied to a post on the message board

    Triple negative is having Jak2+, Calr and MPL Mutations. I think it is rare to have all three mutations.

    April 10 at 1:46 PM view post
    • CindyN has replied to a post on the message board

      So sorry about your daughter, mine was 13 when diagnoised, main thing is to not panic, you can live a long life with ET. My daughter is now 22 and has not had any major problems, just headaches and fatique with is normal with ET. She is not triple negative so I am sure you will have to do what your Doctor's advise. On facebook there is a group that is wonderful with thousand's with ET who share their experiences. Pra...

      February 19 at 2:53 PM view post
      • CindyN has replied to a post on the message board

        I hate so bad you have this problem, I purchased life insurance for my daughter when she was about 6. She was diagnoised at 13. Best investment I ever made for her. You should get your children a policy that they can pay now at a low rate. My nephew was diagnoised with juvenile diabetes and was unable to get insurance when he was older except through his job so I knew to get it for my daughter. I wish you luck findin...

        February 19 at 2:30 PM view post
        • 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, 2018 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, 2018 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
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                      About CindyN

                      Caregiver
                      Emotional Support, Side Effects

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