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Is Essential Thrombocythemia a blood disease or cancer?
Blood Cancers & Disorders | Last Active: 12 hours ago | Replies (114)Comment receiving replies
@gigi05
My oncologist/hemo also told me it is not hereditary and I was not born with it. I took him to mean ET but he could have meant the gene mutation. I am JAK2 positive and was diagnosed with ET in April at age 77 with a platelet count of 581k. Was put on a low dose aspirin a day and told I'd have to go on a chemo pill (presumably HU) if it went above 600k, but at the last check it had, for some unknown reason, gone down a little to the 540s. That's the only time it's ever gone down since it started rising a couple of years ago.
I also wonder why the question about alternatives to HU. From the considerable reading I've done about ET, HU is the standard protocol for treating it and seems to be the treatment that is better tolerated by most people and has the fewest unwanted side effects, for most people.
Thank you for sharing what you learn and prayers and best wishes for a good outcome.
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@cec2
Hello,
Thank you for posting.
Sorry to hear about your diagnosis.
The gene mutation -JAK2 -causes the high or higher platelets. This gene mutation is not a mutation that is directly inherited or acquired at birth. It happens later in life for reasons not clearly understood at this time.
Platelets can go up and down a bit. They can also remain stable at the level they are. So, they are not guaranteed to go up. Mine have gone down a bit in the past year.
You are right about the standard protocol. Aspirin to prevent clotting and the resulting issues, and HU to control platelets if levels get too high. Some people, like myself, are very interested in natural and organic ways to heal, especially since HU is a chemotherapy drug, albeit one that can be taken by mouth, and is generally well-tolerated. For me, this is not an either or situation, but more, what can I learn here, and what else can be done, as I want to be as healthy as possible. And with high platelets, definitely heed your doc's advice. You don't want to have a stroke, or heart problems, etc.
If you have any questions, let me know.