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My wife tested positive for jak2 and has high platelet count
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my wife's routine blood test came back with high platelet count a few times in the past few years, every time the doctor would just brush it off and so would my wife. Finally this time I pushed the doctor to dig deeper and they did a jak2 test and it came back positive. My wife has a bone marrow biopsy scheduled for tomorrow.
Can someone give me some questions that I should be asking the doctor during the appointment tomorrow? So far the doctor says she may have ET. He says because the platelet count has been high for so many years it is unlikely it is anything to serious or "she would be dead by now" his words. We are planning on getting a new doctor after the biopsy but please give me some information regarding our situation if possible. I've been searching online and from what I'm reading it seems like if you are jak2 positive you most likely have an MPN which could be 1. PV 2. ET or 3. MPN.
The rest of my wife's blood tests all came back normal, she is 36 years old.
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Oh my. My first thought was a 2nd opinion. More with more experience will respond soon, but genetic mutations at research oncology units have treatment knowledge for mutations. What are high platelets? For me, a BMB was the key to my blood. White, red and all else. How the cells were shaped and how the cells were reproducing. The bone marrow is where the truth lies with our blood. My MDS was confirmed with that test.
If you are near a research hospital, please go. Depends on what state you are in, but there are many and I expect Mayo moderators will give you hope as you journey forward. I was helped greatly my those on this site as moderators in the blood groups have walked through blood cancers themselves.
The Questions to the doctor? I would ask about the JAk2 test and the findings from the BMB and blood tests.
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1 ReactionBig question to ask on bone marrow biopsy (BMB) day is when the doc will have results. There may not be time to ask many other questions at the BMB, but you could ask.
Which MPN is more likely: ET, PV, or MF? My guess is that if no other blood counts are off, the doc will say ET.
Once you get results:
What is the immediate treatment plan? May be just aspirin + quarterly blood checks for now.
At what point would other treatment be considered, and what would that be?
If I were 36 and wanted to or might get pregnant, I would ask the doc about whether the disease or treatment would cause problems.
What symptoms or problems should I call the office for?
What symptoms would be an emergency (emergencies are rare with MPNs).
Would a heart healthy diet and daily exercise help reduce clot risks?
Do you recommend a referral to a specialist?
Once you've had a chance to ask questions, you'll have a feel for whether you want to work with this doc.
I have had ET (CALR mutation) for 17 years. I'm 71. Have been on oral chemo for 6 years without side effects. Honestly, my bad back (unrelated to ET) causes more problems than ET most days. But I went from being a very high energy person to one who was more easily fatigued. I wish my husband would pick up on that more.