I had a bone marrow biopsy before I got my official diagnosis of ET JAK12 positive. They were looking to make sure I had no other possible markers of mutation. Mine were all normal & I was told I would not need another.

Hi, I am 73 and have ET triple negative. I was on Agralyn for 17 years, before my new dr wanted a bone marrow test done, to confirm what I had, as I had not had a bone marrow test prior to seeing him. Now on Hydroxyurea, since 2nd January, 2025. Have some fatigue, sun sensitivity. I am also type 2 diabetic It can be very daunting, getting this diagnosis, however, it can be controlled with medication, and just becomes part of every day life. Get out there and stay active, is my advice. My platelets are high at 652 but slowly coming back down from over 1000.
Take care.

In my opinion, a bone marrow biopsy is crucial to determine if you have any other issues that could change your diagnosis or affect your treatment options. Don't let the term cancer scare you - or let the fact that HU is a chemo drug deter you from treatment. Most of us diagnosed from ET will live a long time with it and HU is very effective in managing this disease. Yes, there are side effects but if you read the patient information sheet provided with any prescription medication you'll see scarey side effects there as well. I was 68 when I was diagnosed two years ago, have been on HU ever since starting at 500 mg 2x daily 7 every day and reduced to 500 mg 2x a day, 4 days a week. My only side effects were initially short (less than 30 seconds), sharp headaches and mild hair loss, both of which have resolved.

After my JAK2 was found my O/H ordered a bone marrow biopsy which could be done right at the cancer center. An experienced and sympathetic person tried three times but was unsuccessful in getting a specimen. Although the area was numbed, each try was very painful, but I wanted them to keep trying so we’d have a definite diagnosis. I had a fourth biopsy in the hospital where I was sedated and they could use special equipment; that effort was successful and we knew what we were dealing with.
While the pain of the first three tries was extreme, it was short-lived with no adverse results. I’m glad we followed through and could better understand my condition (myelofibrosis). I’ve been on hydrea for almost a year (500mg daily) and continue to live an active and fulfilled life, enjoying my volunteer work, travel, and family. I’m 83.
Try to go ahead with this biopsy so your doctor can know for sure what direction to take. A few minutes of pain is worth the knowledge gained.
Please let me know how it goes for you - I’ll be rooting for you to be strong. You’ve done harder things, I’m sure, and you can do this.