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Sep. 16, 2014

TOPIC: Advocacy, Featured News, Industry, Medical, Patients & Members, Research

Living with Blood Cancer

Posted by Stephanie Cindric

Editor’s note: The following blog is being published to highlight Blood Cancer Awareness Month and MPN Awareness Day.  

I was diagnosed with essential thrombocythemia (ET) at age 16 after collapsing in my high school cafeteria. At that time, lab results showed I had a platelet count of over 1 million and my world was forever changed. During the last 18 years, I have traveled along the highs and lows of platelet counts, treatments, and the emotions of this blood cancer. ET has created some of the worst fears I’ve had in my life, but has also given me more purpose than I could have hoped for at a young age. One of the most difficult aspects of dealing with this diagnosis was the feeling of isolation I encountered with having an “orphan disease.” When ET entered my life, there was limited funding and attention towards myeloproliferative neoplasms (MPNs). As a board member of the MPN Research Foundation, I am very proud of the research and patient support that the foundation has made possible over the years. The research and knowledge has come a long way since I was diagnosed and our work continues in order to further understand and develop a cure for MPNs.

After several years of treatment with Anagralide and Interferon and their associated side effects, I’m quite lucky to be currently maintaining my platelet counts without any treatment. I’ve been able to accomplish things I feared I would not have been able to because of ET. I have grown up with the challenges of ET and have learned so much about myself through all of the experiences. It is interesting how a diagnosis given to me 18 years ago continues to have an effect on my daily choices and perceptions. Because of the hardships and bad days I have had in the past related to essential thrombocythemia, I strive to find the good in each new day I am given, with as much laughter and appreciation as possible. I do admit it is easier to accomplish this on some days compared to others.

What have you learned about yourself through your experience of diagnosis, symptoms, and treatments? Have you found your inspirations have changed?

Watch this YouTube video to learn more about the MPN Research Foundation’s impact on research.

4 Responses to “Living with Blood Cancer”

  1. Linda says:

    I was diagnosed with ET in March this year. I am not on any medication at the moment except for low dose aspirin. However, of late I have started feeling dizzy specially when turning in bed. Does any one else feel this??

  2. Laurie Claxton says:


    Can you share what herbs you are taking? I am on Hydrea with terrible side effects, thanks

  3. Maureen says:

    I was diagnosis in 2009. So far I have been using herbs and acupuncture treatments. My platelets were 656 today down from last month. Good luck to everyone !

  4. June Davies says:

    When I was diagnosed 14 years ago I had never heard of Essential Thrombocythemia, and neither had most of the doctors at my surgery. Fortunately I was referred to a marvellous consultant at my local hospital who put me on Hydroxyurea and clopidogrel. I was too excited that day to think much about my illness as my twin grandsons were due to be born. Apart from some hair thinning I have had no other symptoms and am glad to say that I have visited my son and my grandsons in New Jersey again this year. Having been part of my life for the past 14 years I hope that they will continue to be I am now nearly 79. I hope this will give comfort to other patients.