What about no treatment for ET?

Hi Patty, With ET, essential thrombocythemia, there is an overabundance of platelets in the blood. The risk of not treating this condition could lead to strokes and transient ischemic attacks (mini-strokes), Heart attacks or
Pulmonary embolism, when a blood clot blocks an artery in the lungs.

Here’s a good article from verywellhealth.com providing information on ET and why it’s important to treat.
https://www.verywellhealth.com/essential-thrombocythemia-2860907
Has your doctor recommended treatment such as Hydroxyurea and you’re hesitating to start the medication? What are your reservations?

My numbers are only in 500 and many people have much higher numbers than I do. I am at risk because I do have controlled blood pressure and uncontrolled cholesterol and a family history of heart attacks. I was already on the Hydro and I ended up in the ER because I’ve had so many side effects, especially my legs and my doctor has told me that that is not a typical symptom. The hematologist said the second line of defense in terms of side effects is worse than Hydro. I am very sensitive to medication because I have not taken them most of my life.

What I learned talking with other patients and my doc:

If you have the CALR mutation, you might be able to get away with just baby aspirin for awhile, if you are under 60 and have no clot history.

If you have the JAK2 mutation, you are at higher risk for clots, doesn't really matter what your platelet count is. Anything over 450 is a risk.

ET is progressive, though, and once you hit 1,000, patients run the risk of developing vonWillebrand's syndrome, which can, ironically, cause bleeding.

Maybe ask your doc to refer you to an MPN specialist for more info?

@pattycz, you might also be interested in this related discussion:
- Essential Thrombocythemia: Making treatment decisions: https://connect.mayoclinic.org/discussion/essential-thrombocythemia-4/

Patty, have you discussed wathc and wait with your oncologist?

Thank you so much.
I will definitely try the link. I mentioned to the hematologist that I might consider not taking medication. He said that he would respect my decision. My cardiologist said don’t let my number go over 750 if I’m not gonna take the meds, I have not discussed it with my primary care doctor yet.