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My wife tested positive for jak2 and has high platelet count
Blood Cancers & Disorders | Last Active: Oct 3, 2025 | Replies (32)Comment receiving replies
Thank you everyone for the responses. I am in the waiting room as I am typing this and she is getting her biopsy done. A few points of clarification, the discussion with the doctor I mentioned in the original post is a oncologist/hematologist not her pop. I asked the doctor a few questions just now and he seemed very nonchalant about it. He basically told me that he is sure she has an MPN and most likely ET but not sure if she has other MPNs as the biopsy will tell that. He also mentioned that there is nothing we can do at this time regardless of the results, no medication until she is 60 and no lifestyle change that can make things better or worse (like ET mutate into a worse MPN). I don't believe this is true based on my research...
Replies to "Thank you everyone for the responses. I am in the waiting room as I am typing..."
That last sentence of yours is what prompts this response. If your wife doesn’t trust and believe what this MD is telling HER then find another doctor.
You obviously have concerns and assuming you have your doubts about the MD and treatment and your wife agrees with you then find her another doctor.
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Yeah, let this guy do his tests and diagnoses, and then ask your wife if she wants your GP for a referral for a second opinion.
My doc is a hemo-onco with blood cancer patients in four counties, and she has just 6 ET patients. Most clinicians have little experience with MPNs, and little interest in us, cuz their textbooks are behind the times and usually say that ET is a symptomless blood disorder/cancer (a point on which some docs prevaricate) and patients live a near-normal life span. Plus there are kids in their waiting rooms with life-threatening leukemias, so MPN patients get less attention.
Researchers have logged ET symptoms, especially headaches, fatigue, and brain fog, for at least the last 10 years. And clot risks have been known for decades. The worst symptom of ET is doctor indifference.