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Essential thrombocythemia: Interested in connecting with others

Posted by Tessa @tessa, Nov 12, 2011

I am interested in connecting with others with this illness. I was diagnosed this summer with ET and have been to see two hematologists here in Michigan and then went out to Mayo clinic. I am a 27 year old female and wondering what kinds of experiences others like myself have had. I had doctors telling me I should go on hydroxyurea which is chemo therapy which I was very hesitant to do when I was having absolutely no symptoms. The elevated platelet count was simply found on a routine CBC. When I went out to Mayo I was told all I needed to do was take aspirin that there was no need for chemo therapeutic intervention at this time,especially because I am interested in having kids. I am interested in hearing other peoples experiences.

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1995victoria | @1995victoria | Sep 22 9:49am

my PLT were over 1,100, and now within range on 2 caps HU plus baby aspirin. I've been on HU almost 5 years now, but I'm much older than you.

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vickieannb57 | @vickieannb57 | Sep 24 10:40am
In reply to @vickieannb57 "Have they told you to take Iron and B12 . I take both and some days..." + (show)
Profile picture for vickieannb57 @vickieannb57

Have they told you to take Iron and B12 . I take both and some days are better than others. My white cells are normal red cells are low but platelets are 297 I take 500 HU daily and have been on it since May of this year. This website has helped a lot lots of info here the Doctor I see is not a lot of help. I have some spots breaking out think they might be previous sun damage. My oily hair is dryer but no hair loss . So far I have had minor things happen that I think the HU might have caused but they soon leave so no major issues. Good Luck I am 71

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I should have said before that I was on baby aspirin at first. After a month of HU I had AFIB not sure why had a stress test and all was ok. My doctor put me on Eliquis so no more aspirin only Tylenol for pain. Have a blood draw today will see how that goes. Have a good day

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tinak123 | @tinak123 | Sep 25 3:31pm

Hello, I am in the same boat with the Hydroxyurea not really wanting to start this drug. I am 48 and diagnosed a couple months ago, mine was also discovered due to higher levels on blood test. Welcome to this group!!!!

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