Hi @cbernhart1 ,
I agree. I had a bone marrow biopsy after asking for one from my first oncologist/hemotologist. 1/2025 when she insisted I had ET. I have CALR1 mutation so I asked her how she was so sure I had ET and was prescribing a very high dose of Hydrea for my size and weight. So she ordered my bone marrow biopsy and then changed my diagnosis to PMF 2/2025. She could not refer me to a MPN specialist because that insurance had none so she told me I could pay out pocket to see one which thought was not right. So I changed my insurance 1/1/2026 and finally saw a MPN specialist who honestly seemed like a flake as she not read my chart at all! She put down that I had JAK2 and CALR but I do NOT have the JAK2 mutation at all! She claimed she discovered the JAK2 gene when she was a student. Then she questioned my NGS data when I showed her my copy which she obviously had not read in my chart! She said her data would be better and wanted me to do all my testing over! I do not care to ever see her again! My other insurance did a lot of testing and nothing has changed in my opinion.