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Essential Thrombocytosis

Patso
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I have been diagnosed just 2 months ago with HE am presently being treated with Chemo capsules Hydroxyurea 500mgs once daily.  My condition was discovered by an alert pract8ce nurse who queries a large bruise on my arm, from a bang on my elbow as I thought.  GP advised second blood test for platelet levels 2 months and as there’d platelets had continued to rise he red flagged me to the haematology unit of local hospital.  Have been taking baby aspirin for several years due to angina and consequent stents inserted few years back. The stents appeared to have completely solved the angina.   I also have diabetes type 2 but although starting hydrea just over one week ago I have little to no side effects.   Just slight nausea at times.  Although now in my late 70’s I continue to have lots of energy and enjoy keeping very busy so please God this will continue.  I am keen to know if my platelet levels have come down any and will know at end of this month at my follow up appt.  Big worry would be if my white cells reduce significantly leaving me very susceptible to infection.  Meantime keeping busy and keeping in company also stops over thinking.  Sleep pattern is awful and gas been for months and am on 2 week trial of Zopliclone 7.5 so shall see how that develops.  Very keen to hear from fellow suffers of H.E. for  coping mechanisms and diet or other. My platelet levels went up to 700,000 so hopefully down a bit next time. .

  • As I noticed this is your first post here on Cancer Chat, I just wanted to stop by and give you a warm welcome to the forum, Patso.

    It sounds like you've been through quite a lot but I'm glad to hear you are full of energy and enjoy keeping busy in spite of the challenges your condition has brought to your life. 

    Hopefully, some of our members who can relate to what you are going through will be along shortly to share their experiences with you and give advice.

    As you mentioned that you'd like to know more about diet, I'm linking this section from our website with information about diet problems you may find interesting to read, and if you go back a bit on the website, we have more information on coping with cancer. I hope these two links can be of some help.

    Also, feel free to give our cancer nurses and ask any question you may have. Their lines are open Monday - Friday between 9 a.m - 5 p.m on 0808 800 4040.

    And as you go along come back now and then and let us know how you are getting on.

    Wishing you all the best,

    Renata, Cancer Chat Moderator

     

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    Hi. I was diagnosed with ET last year. It seems that my platelets have been high since 2005 but no one picked it up until recently. I have had a bone marrow biopsy that showed abnormal platelets (i had nearly a year of appointments while they tried to find a source of my low ferritin-a cause of high platelets). I am on clopidogrel and hydroxycarbamide. I do have days of nausea and fatigue but keep going. My problem is knowing how to classify this condition and trying to get people to understand that what seems to be low doses of medication can still make me feel bad. I don't feel that I can classify ET as cancer but I want to know what is the prognosis after 10, 20, 30 years. I hope I can make contact with other people with similar problems.
  • Offline in reply to JanetRH

    I was diagnosed with Et last November 2018.  It was detected after a routine blood test in August 2018.  I had been having low iron for years.  Also I was finding bruises which appeared here and there.  I was put on Asprin daily.  Then 500 Hydrea.  Then the Hydrea capsules went up to 1000 a day.  I’ve been on them about 4 months now.  My platelets went down but last week were slightly up.  I do get fatigued some days.  But other days I feel ok.  I don’t dwell on this chronic blood disease.  I was told by my Consultant this illness may have started about Nov. 2013.  I’m no shocked as I had been getting headaches every day for years.  Fatigue and low iron.  The Hydrea has helped my headache which is most probably because platelets went down.  But I do have fatigue days.  I have been positive since being diagnosed as this blood cancer will always stay in my system.  I will always have to take medication.  But so do people with other illnesses.  My disease is a rare one so a lot of people don’t understand anything.  So I just say I have a blood disorder and that’s it.  

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