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@etandme0983

I was just diagnosed with Jak2/ET and had a bone marrow biopsy that ruled out other cancers . My levels are 450 to 510 now , but my Oncologist/Hemo acted like she wasn’t very familiar with this disease , so I’m getting another opinion from specialists in Blood disorders . I spoke with a specialist friend and she said there is nothing that I did at all to cause this . I just had a gene mutation (Jak2) that attacked my platelets and made them multiply . I had blood draws that ruled out infections , anemia, etc . Nope , I was just unlucky . They call this “The Old People’s Disease) and people from 60-80 get it . Well , I’m 69! . Haven’t started on HU yet , only 2 baby aspirin until I switch doctors or my platelets increase a lot more . So far though , a horrible headache , dizziness, mouth sores and fatigue. I was told only .01% of the population have this, but it seems like from this blog , that number is wrong 😑 .

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Replies to "I was just diagnosed with Jak2/ET and had a bone marrow biopsy that ruled out other..."

So sorry. Hope you feel better soon.

Welcome to the ET club.

ET is indeed very rare. You'll find so many of us here because this forum brings us together from all over the world.

For most of our primary care physicians, each of us will be the only ET patient in her or his career. So it's really hard to get the info we need, especially when the diagnosis leaves us in shock.

That's why it's great you've found this forum! Here is where your questions will be answered.

Alas, ET isn't just for our golden years. It occurs in young people too. I really like that you've been assured: There is NOTHING we do to cause ET. Nobody understands yet what sparks the mutations that drive ET.

To encourage you: HU will probably ease your ET symptoms (headaches, light-headedness, fatigue). It's true, your platelet count isn't extreme, but you might welcome the relief HU can bring.

You're among friends here.