Anyone living with Essential Thrombocythemia with JAK2?

yes, first year or so, the blood tests and meds are up/down and sideways, first every week, then every other week, then once a month and now every 3 months. I've been on HU+baby aspirin for almost 4 years now....my count is usually between high 300 and mid-400. I've had a total of 7 covid shots and 4 flu shots. The only shot that affected my count was the shingles shot, but there is a research paper that mentions the shingrix and platelets. My count dropped dramatically, but then regained to "normal" after about 3 months. Then I had to have blood tests every few weeks, until I got back to "normal"......all the best....

You’re in the right place. There is a lot of good information here. Many of us are living normal lives while taking our daily Hydrea dose with little or no side effects. I turned 70 this year and I’m still quite active. Fatigue is the biggest problem, but is that because I’m 70? It doesn’t stop me from playing ice hockey 3 times a week and finishing the inside of a cabin.
Work with your doctor, follow your numbers and be your best advocate! You got this.

I learned I had ET at my annual Medicare checkup 2 years ago, my platelets were over 900,000. By the time I saw an oncologist 3 days later the count was over a million. They put me on 500 mg of Hydrea right away. Twelve months of weekly blood tests and varying doses of Hydrea later we have settled in on 4 days a week 1,000 mg Hydrea and 3 days a week 500 mg. Now a year after that my platelet count is down to 315,000, the lowest it’s ever been. I’ve had no obvious side effects or symptoms from the Hydrea or the ET and consider myself blessed for that. I stay active but am tired every day. It doesn’t keep me from doing things. It just takes longer.
My first oncologist told me everyone’s different, but if you’re like most people with ET when you die it won’t be because of ET*.
*as long as you take your Hydrea 😊

Hello to you, with hugs.

"Afraid and mad" is where this weird, weird diagnosis leaves us.

Who even knew you could have too many platelets?

It's really scary. And unfortunately no one you know, probably not even your doctor, can help much.

Certainly there's suspicion that covid shots may be a factor.

But ET was identified more than 100 years ago. And people had it long before it was identified. There were no covid shots back then.

Sadly, no one yet knows what causes ET.

But others on this forum have lived with it for decades! It is NOT a death sentence.

It's also not a walk in the park. That's why taking HU (hydroxyurea) is important. For most of us, HU brings our platelet levels down.

This restores our energy and (some of the time!) relieves the terrible headaches ET can give us.

What will be your initial dosage? I hope you'll be started off with a low dose, then get careful monitoring (with blood draws) to see how HU is helping you.

Most of us like to take HU with food. We also find that drinking lots of water is good.

You have a million question, and this is where you'll find answers.

You're among friends, and we're all ET aliens together.

Wishing you all the best your story is quite similar to mine. When my doctor asked me what I did different in 2021 when my blood started going wonky the only thing I could think of was the Covid shot. I am on the hydroxyurea and so far not too many side effects. I cannot deal with however it is a chemo, and I hate the thought of having to take it for a long time. Best wishes.

Thank you for the helpful information. I am seeing the dr today to discuss first time since blood work came back
I question the chemo word throws me for a loop but I know there are a lot of people taking this bill
Always been healthy never had to take medicine but hearing from people like you has made this visit easier. Thank you .

Thank you for replying just trying to determine if this is a world thing of this happening
The government made it a requirement and now no one wants to admit to the possible occurrence after covid. I will continue to be an advocate as I see it the government should be paying for medicine, blood draws, and bills
Chemo part scares me, does it take out your hair all these unknowns? I will be asking today. I read where they could do a blood draw. Again, your comment has made going to the dr today easier.

Getting this diagnosis is overwhelming.

HU has been widely used for a long time -- not just for blood cancers, but also for sickle cell anemia and some "acute" cancers, including mouth cancers.

I was diagnosed at 69 and for me too, having to take a medication daily was new.

I do hope your doctor starts you on a low dose. That lets your body get used to HU with no side effects.

Are you also taking low-dose aspirin? If not, maybe bring this up when you see the doctor today. Aspirin keeps our platelet-heavy blood slippery, protecting us from cardiovascular issues.

Some people experience hair loss. Others -- including me -- do not.

"Chemo" is a scary word. So think of the good things HU will do for you: protect your heart, restore your energy, safeguard your bone marrow.

My ET care is covered in full even by my stingy Medicare Advantage plan. Hope you too will have full coverage.

Life is still good! 72 yo female, diagnosed about 2 years ago now. Platelets run mid-high 600’s on one baby aspirin every morning. Reached over 700 once, my doc talked about HU, but then we decided to wait as long as I exercised at least a couple times a week. Each of us is a little different, so work with your doc.

We still travel a lot, Europe almost every year. Took 3 weeks in Italy and Slovenia this year. My Heme doc says 2 aspirin/ day when we fly. Works for me 😊

Btw: I still work PT, and take it easy when I’m tired. Mostly my life has not changed. Read others posts and you’ll find yourself in good company. Blessings on all your days ahead.