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

12 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

    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,

    • Terri says:

      I have been on hydrexurea for what seems forever. From what I have read and researched it doesn’t have a significant link to leukemia. Take your hydrexurea let the doctors get you regulated and you will feel an improvement. But, you will need your rest have a family member help you and your babies. This way you can take naps too. Hang in there and believe in the doctors.

  7. Terri says:

    I was diagnosed at age 30, I had lost my second son due to placenta abruptio. It wasn’t until my platelets reached 980,000 did the doctor put me on hydrexurea and a baby aspirin. I am 41 now and my spleen is very enlarged extending into my pelvic region. I wake up at night with horrible night sweats and I have dizzy spells. The doctor has put me on 1500 mg of hydrexurea and now agrylin(2pills). The agrylin feels like my heads going to blow off. The important question I have for some of you battling this disease is how do you make it each day on three hydrexurea. All I want to do is sleep. I am a principal and I catch every sickness. It’s very frustrating because I love my job. I’m scared I will need to say good bye to my career just to be healthy. Thank you, and positive thoughts to all of us battling these rare diseases.

    • Rick says:

      My son was put on agrylin for about 1 1/2 – 2 years and started to develop fibrosis discovered after bone marrow biopsy. Switched to Hydrea and fibrosis dissapeared. I have read that others have had this problem as well so I would try to find a different therapy if possible.

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  9. Pam says:

    So glad to see others with ET– interesting when I read it causes ocular migraines– I get them once in awhile. Wondered why I got them. Also does anyone notice anything different with their tongue or mouth with Hydroxy 500 mg daily. Keep for getting to mention it to my oncologist. Have also gained wt and having a hard time losing it. Have been on med for over a year. Was diagnosed with ET about 6 yrs ago. But Dr thinks I had, had it for a few yrs before final diagnosis.

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