I have E.T. with positive JAK2 gene mutation.

Posted by snowcohn @snowcohn, May 17 3:50pm

I was diagnosed with E.T. in April, 2025. I am positive JAK2 gene mutation. I currently take 81 mg aspirin daily and 500 mg Hydroxyurea 5 days per week. I definitely have fatigue. But I am wondering if there are any others who also have insomnia and brain fog. I have both. I am wondering if it could be from the hydroxyurea.
Nancy C.

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janemc | @janemc | May 28 6:28am

In reply to @azsomeone "@mw2023 Hi. Yes it was after my second BMB for ET. I am not diagnosed with..." + (show)

@azsomeone

Welcome to the blood cancer rodeo! Who even knew you could have too many platelets? Alas, it seems the majority of our PCPs sure don't.

Congratulations on finally finding a good doctor. I hope she's starting you on HU very s-l-o-w-l-y, as that allows your body to adapt to it.

Please remember, you can live a long life with ET. As cancers go, ours is a "good" one.

Please let us know how you're doing!

mlltexas | @mlltexas | May 28 7:59pm

In reply to @azsomeone "I was just diagnosed yesterday also with JAK2. This has been a crazy journey. Went to..." + (show)

@azsomeone

I was just diagnosed yesterday also with JAK2.

This has been a crazy journey. Went to hospital 18 months ago with chest pain. When CBCs came back I noticed my platelets have been high for at least the last 9 years (this was the first time I saw a trending report. Didn’t think much of it until a couple of months later when I found out high platelets were not a good thing.

Talked to my GP who didn’t think it was an issue (platelets were in mid 400s at the time. But trending up). He said of it made me feel better go find a hematologist. I was lucky, my new cardiologist referred me to a hematologist right away.

So hematologist says to cardo basically or order a cbc and she will review it because they are too busy to take benign cases.

We’ll report comes back and it says at the end that the results warrant her seeing me.

At this point no symptoms, just wanting to rule anything out. She does a JAK2 test and it comes back positive with .7% burden. She says she has never seen one that low lol.

She asks if I am open to a bone marrow biopsy. Since I already reached my insurance deductible I say sure. She says great we can rule anything out and it was nice meeting you.

Comes back with JAK2 at 2%. MF-1 fibrosis, hypercellularity, basically everything except abnormal morphology. I am 64 so she puts me on aspirin and we do bloodwork every three months. Platelets and other counts are now slowly trending up. I see her in February and she asks if I am open to another biopsy. She says she doesn’t expect any changes in less than a year so if that’s the case I will stay on aspirin and see her next year.

Well got the results and morphology is now abnormal too. And platelets up to 567 with whites and reds at high end of normal. Last piece of the puzzle and diagnosis was yesterday. She is still shocked that it’s come to this so fast with the low JAK2 burden.

Started hydroxyurea today 500 mg. I am here to read all about this.

Sorry for the long story but it’s amazing to me how this all played out - just because I noticed after a hospital visit my platelets were a little high for so long.

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@azsomeone I'm interested bc my case is similar. My platelets are increasing more than expected with my 5% Jak mutation. Getting BMB next week

Colleen Young, Connect Director | @colleenyoung | 11 hours ago

In reply to @mlltexas "@azsomeone I'm interested bc my case is similar. My platelets are increasing more than expected with..." + (show)

@mlltexas, how did the bone marrow biopsy go? What did you find out? Next steps?

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