Hi lynnebgraham,
Was that your first bone marrow biopsy or did you have them in the past? Why did you get your recent bone marrow biopsy? I know you were diagnosed with ET for 18 years.
I do not know much about triple negative but think it has to do with your not having JAK2, CALR, or MPL gene mutations. I think it can be tested by blood work or bone marrow biopsy.
I had CBC routine labs in December 2024 that found strange pattern in my platelets during that short window of time. On January 10, 2025 I was told by my first ever visit with an O/H that I had ET because my platelets were over one million. First time lab reported 1200(000). They went down to 844(000) with me taking nothing so I asked her why which the O/H did not appreciate me asking. Then I got a bone marrow biopsy and Molecular Genetics Testing which determined I have CALR mutation, but JAG2 negative and MPL negative. On February 10, 2025 same O/H sent me a message without me visiting her stating that I may have PMF which is worse than ET I read. I think yours has better prognosis as you have ET triple negative mutations and not PMF triple negative mutations.
Hopefully someone on this site can give us more information as both of us are confused and do not really know much about what we have.
Just try to stay positive and calm is my advice and what I am doing. I am blessed to feel just fine and have no symptoms. I could not get an appointment to see my O/H until April 4, 2025 so I am waiting for more information. Honestly, I wish I could get an appointment sooner and with an true MPN specialist but I doubt my Senior Advantage Plan with Kaiser really has any here in very Southern California. Hope you are feeling well too.