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Essential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)Comment receiving replies
Thank-you I second that, absolutely agree, everyone of us has their journey. ET is a blood cancer there are mutations in our blood and any mutation comes under the CANCER umbrella and is not something to shy away from. I am not afraid to say the word CANCER. My story is long and I won't bore you I'm a survivor having had a few major events, lucky and thankful to be alive. I am a fighter and will fight this and live with it.
Replies to "Thank-you I second that, absolutely agree, everyone of us has their journey. ET is a blood..."
I am a breast cancer survivor and a fighter who is not afraid to say the word cancer. My oncologist for the breast cancer was also the hematologist who told me, when I called the JAK-2 diagnosis my second bout with cancer, that this form of ET was a blood disorder--NOT cancer. (Her emphasis on NOT.) We all have different risk factors and varying ideas on quality of life. I respect your treatment decisions as the right choice for you and your situation.
I wish to maintain an active mind and lifestyle for as long as I am able. Brain fog while on hydroxyurea made me wonder about dementia, and lethargy and lack of energy kept me from hiking, a passion that has me on the trail year round even less than a week after double mastectomy. These side effects cleared soon after stopping hydroxyurea while continuing low dose aspirin.
My only risk factor is age (71). My platelets have so far stayed below 700,000. Except for mild osteoarthritis of knees and shoulders, I have no other health issues. Stopping treatment and continuing to monitor platelet levels is the right option for me at this time. I've explained my decision to family and friends, including a hiking partner who's gone on 1-3-week-long wilderness backpacking treks with me every summer for the past ten years. Carpe diem!
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Not all mutations are cancer, though some cancers are caused by detectable mutations. The reason the WHO reclassified ET as a chronic cancers was because of the proliferation of platelets in the bone marrow.
Some doctors disagree with the reclassification. It's above my pay grade to argue either way.
I get that we all want to be as positive as possible and not waste today in what-iffing about tomorrow. Most of us can live a normal lifespan. Many of us will not die from ET-related complications.
Part of taking care of ourselves requires accepting that we have a chronic, incurable disease that needs lifelong monitoring and maintenance.
Honestly, you should feel free to tell us about your ET if you want. My guess is that most of us don't talk about it to family or friends. Most of us don't look sick, and we push ourselves to act normal. This is the one place we shouldn't have to be brave and noble and pretend it's just a scratch.