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Profile picture for cetzler @cetzler

Hello, I just joined the Support Group today. I was diagnosed with ET yesterday. I tested positive for the JAK 2 gene. My platelets counts are in the upper 500s. I am 61, but am otherwise healthy with no risk factors. Do you think I need to go on Hydroxyurea or can I try a more natural treatment?

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Replies to "Hello, I just joined the Support Group today. I was diagnosed with ET yesterday. I tested..."

@cetzler Welcome to the club no one wants to be in!

What "natural treatment"? I've had ET x 18 years, and there isn't a supplement or diet that addresses out-of-control platelets caused by a genetic mutation, though I've seen claims for everything from CBD oil to cinnamon to personalized IV infusions.

Some people right after diagnosis do feel they need to at least try an alternative treatment before they agree to HU. If that's what you decide to do, it's a good idea to let yr doctor know that's your plan so that you can be monitored appropriately.

Your oncologist will assess your need for hydroxyurea based on age, mutation type, and clot history. Docs may also look at your family history for types of strokes, heart attacks, and clots.

Doc will prob also recommend a daily baby aspirin, which reduces clot risk.

You *can* benefit by a heart healthy diet and appropriate exercise that will reduce over all stroke risks. Get a handle on weight, hypertension, and cholesterol if you need to.

@cetzler
I know this diagnosis can be surprising and very scary. I was diagnosed at age 71 with no symptoms except a climbing platelet count.
After consulting with a hematologist/oncologist, and hearing the possibility of blood clots and stroke, he diagnosed daily baby aspirin and 500 mg hydroxyurea. I continue to feel no symptoms, but after 6 months, my platelet count has dropped into the normal range.
Do research, and read the comments on this website, which are very helpful and comforting.
Only you can decide what is right for you. May God guide you in your decision.