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DiscussionAnyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 20 hours ago | Replies (104)Comment receiving replies
Replies to "Wishing you all the best your story is quite similar to mine. When my doctor asked..."
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 😑 .
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.