Anyone living with Essential Thrombocythemia with JAK2?

Posted by lindamarie63 @lindamarie63, Dec 3 10:10pm

Has anyone been living with,ET, jac2 mutation

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eileen11108 | @eileen11108 | Dec 4 7:12am

I was diagnosed in June 2022 with ET JAK2. I have been on different doses of Hydroxyurea since that time. Just search ET JAK2 on this website and you will come up with a lot of people with this condition.
Best wishes, Eileen

bluegrasspv2018 | @bluegrasspv2018 | Dec 5 6:21am

I joined the JAK2 club in 2018. I have Polycythemia Vera which is a MPN sister of your ET. I remember my blood doctor telling me I have a genetic mutation of the Janus Kinase gene. (JAK2) I was epecting to get some kind of super hero powers like spiderman but that never happened. I take a 500 mg Hydroxyurea every day which I call "Chemo in a pill." My platelets are under control and I have very few side effects. I do get fatigue in the late afternoon and go to sleep early. Is that just because I am a 65 year old man? Who knows. My advice is to stay active and enjoy every day. From Kentucky, in the heartland of America.

janemc | @janemc | Dec 5 6:53am

Hello, lindamarie! Others on this forum have been living with ET with the JAK2 driver for decades.

Diagnosis is SCARY! Especially since this is something you (and maybe even your doctor) had never heard of.

But we are lucky that we have effective treatment options. The JAK2 driver is the most frequent and the most studied form of ET.

We are lucky to have this forum, too. This is a great place to ask questions and benefit from others' experiences.

We're here for you!

debhammel | @debhammel | Dec 5 6:54am

I was diagnosed with this mutation and ET last Fall, and started Hydroxyurea as my platelet count was in the mid 700s and climbing. I have stabilized with platelets hanging right at 192 for the last six months and take HU only 4 days a week. I consider this a win!

eileen11108 | @eileen11108 | Dec 5 7:26am

In reply to @debhammel "I was diagnosed with this mutation and ET last Fall, and started Hydroxyurea as my platelet..." + (show)

Are you taking a high dose of HU four days a week? I have never taken more than one 500 mg tablet, now at four days a week. My last lab was 515. That is great getting to 192 and I hope it stabilizes at that for you. LabCorp says 150-450 is normal.
Congrats! Eileen

debhammel | @debhammel | Dec 5 1:34pm

Yes, I take 500 mg twice a day, 4 days a week. Started at 500 mg twice a day every day and gradually backed down to current dosage. Other than some short (less than 30 seconds) intense headaches while on the daily regimen,
I have had no side effects.

tleona3024 | @tleona3024 | Dec 8 8:23am

In reply to @bluegrasspv2018 "I joined the JAK2 club in 2018. I have Polycythemia Vera which is a MPN sister..." + (show)

Do you phlebotomies? If yes how do you tolerate them? And how often do you do them?

Colleen Young, Connect Director | @colleenyoung | 7 hours ago

Welcome @lindamarie63. I hope you saw the helpful replies from several members living with ET with the JAK2 mutation. Here are some additional discussions you may find helpful:
- Essential Thrombocythemia: Looking for information and support https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/

- All ET discussions: https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=Essential+Thrombocythemia+#discussion-listview
- JAK2 https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=JAK2&index=discussions

Lindamarie, is this a new diagnosis for you? What treatment options have been suggested? How are you doing?

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