← Return to Essential Thrombocythemia: Looking for information and support

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@janemc

Diagnosis is an awful shock -- please know your friends here are sending love and support.

Who has ever even heard of "ET"??? And then to learn that you have something totally different from what you had first been told -- that's an awful lot to deal with.

Yes, ET is a chronic blood cancer. It happens when the "drivers" that regulate platelet production mutate, causing our blood marrow to churn out platelets like mad.

Having extra platelets makes us prone to blood clots, and this manic over-product also depletes our bone marrow.

But don't be discouraged! The low-dose aspirin you've been taking is already protecting you from blood clots. And there are effective medications for ET.

HU is what most of us take. Some ETrs have been on it for decades. It's cheap and it works.

Should you have adverse side effects, some other options exist too.

Finding your effective dose may take a while. Frequent blood draws will be part of the process.

You can learn SO MUCH on this forum. Whatever concerns or issues you may have -- someone else here will share them.

You are not alone!

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Replies to "Diagnosis is an awful shock -- please know your friends here are sending love and support...."

Thank you for responding – – all of you – – very much appreciated. I found out today that I have the jak 2 mutation from Genetic bloodwork. Do I need to have a bone marrow biopsy too?
With this diagnosis, it is not quite as mind blowing as the ovarian cancer was Because this has a long life expectancy with treatment. However, my worst fear in life is having a stroke. I would rather die of cancer than have a stroke.😕 So wouldn’t you know it? I get a disease with the high probability of stroke.!!!

So with the Jak 2 genetic mutation, should my family members be tested?

I tested positive for the mutationBRCA 1 years ago, —all my family members could be tested as well.