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What was your platelet count before starting Hydroxyurea?
Blood Cancers & Disorders | Last Active: Sep 16 9:34am | Replies (23)Comment receiving replies
At 69, my platelet count was in the 700s when I was diagnosed with ET.
That prompted my oncologist to immediately put me on a daily low-dose aspirin and HU.
Three years later, my count's staying below 500. That's still "high," but I feel so much better than when I was in the 700s.
It's great that you can see an MPN specialist soon. Please share what you hear at your appointment!
Replies to "At 69, my platelet count was in the 700s when I was diagnosed with ET. That..."
@janemc Did you get off HU, even for a little while to see if your count “stabilized”?
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Hi @janemc . I was diagnosed with PV (jak-2 mutation) 1.5 years ago. My onco wants me to go on HU due to my platelets levels fluctuating between 600-800. For now, I've decided to stick to one daily aspirin + like you, (mostly) anti-inflammatory diet and remaining active. I have been practicing daily yoga and meditation for the past 55 years + recently added the gym 3x/wk. It all started 15 months ago, while visiting my native France, I felt unusual tiredness and noticed unusual and painful redness and burning sensations, with some blisters in my toes. This was diagnosed as Erythromelalgia - apparently a common occurence with PV. The condition, however has abated over the past 15 months. No other symptoms beside some probably age-related forgetfulness. I am a psychotherapist and continue seeing clients. My hemato/onco has agreed to let me monitor my blood tests (which I do every 2-3 weeks) and see him every 3 months.