Jun. 23, 2014
Posted at June 23, 2014 1:13 pm by Mary Dunkle

7 Responses to Living With Essential Thrombocythemia (ET)

  1. Mrs.&Mr. Randau says:

    We have known Antje for years.
    She is a remarkable lady w./ ” heart of gold “.
    Her positive attitude re. daily life and her desire to be
    of assistance to others who suffer from MPN is remarkable.

    May her efforts be recognized and bear the fruits of her
    dedication.

    Your friends Elke and Ralph

  2. Hi Mary,
    I completely agree with this key point: “Learn as much as you can about your disease. Knowledge is power and it will enable you to share in the decision-making for your care and treatment.” I saw mylself in this article. Thanks.

  3. Wendy says:

    I was diagnosed about six years ago. Went on hydroxyurea about two years ago and for the most part have been relatively healthy. I am sixty-years old and continue to work in the tech dept for an environmental conservation organization. I just recently started experiencing pain in my elbow — just the right one — anyone had this symptom? I’m seeing my doctor tomorrow and then my hematologist. I would appreciate any insight into this new development.

  4. Mike Roesch says:

    I was diagnosed with ET about 18 months ago. I am on 1000mg of Hydroxyurea which I have NO problems with. My counts have dropped but still over 600. My question, in looking for additional life insurance, do I need to list this as a cancer-type disease or not?

  5. John Milliner says:

    I have had ET for the past 8 to 9 years, at first undiagnosed, have progressed from 500mg Hydrea to now 1500mg daily. I have a six weekly blood test, so can monitor the platelet count. It is usually in the 500 to 600 range. I was diagnosed in 2008 after an annual health check showed a count of 1100, shows the importance of an annual inspection. If I hear of any new “Cancer Cures” that sound promising I give them a go for six weeks, added to my current dose of Hydrea. I tried a cupful of Asparagus liquidised daily, for an adverse reaction. platelets increased about 100, another time I tried grated frozen lemons on my breakfast, no effect as a non drinker I tried 125 ml red wine, just about no effect, and I would rather have a coffee, so that was no go. The only thing that does work is 15mg Fish oil Morning and night, my Doctor Approves of this, it is founded in medical fact.
    I Have no real side effects, and after I started taking Hydria 6 years ago my use of panadol virtually ceased from several headaches per week – month, now it is several times a year.
    I do have some sensations of tingling in my fingers, but little else

  6. Quinesha says:

    Hi I am a 28 year old female just diagnosed with a MPN. I am dealing with learning to live with this for life. I am now on Hydroxyurea 1000mg a day. I have feared the development on Luekemia by taking this. It says it is a low risk to develop but I am still nervous. Trying to keep my faith strong, but I just got out of the hospital yesterday after 5 days. My counts were at 2.3 million and only got released on them down to 911,000. I was anxious to get home to my 4 lovely children. I want to chat with people who live with this and get encouragement, that I should be thankful for today. I was experiencing bad headaches in which I never had before, which led me to tell them to get blood. Any advice or words of encouragement would be great.

    • Lloyd says:

      Sorry to read that you’ve got the problems so young and with 4 young ones to care for. However, hope is alive! I was diagnosed in my 50′s and have adapted to the Hydrea quite well – keeping counts down to 600 on 1 000mg per day. Some fatique will be felt. I’ve used CoQ10 enzyme (health section of Walmart) to re-energize the cells but only as needed as I’m not big on supplements – just a good balanced diet. Some promising things if your blood analysis points to the JAK2 mutation – seems stem cell research could fix that as 1 in 2 MPD patients have that.
      All the best,
      Prayers,

Leave a Reply

*

EURORDISRare Disease Day USNORD