Hi,
I hope this discussion restarts! After having high platelets on a routine physical with lab work done in December 2024, I was given diagnosis of ET in January 2025. After I found out from NGS testing from my O/H that I have CALR1 mutation, I read that could be ET or myelofibrosis, so I asked her for a bone marrow biopsy. She ordered one which was done in February 2025. She changed my diagnosis to primary myelofibrosis after talking with the pathologist on the phone who told her it looked more like that. My risk analysis for myelofibrosis is low risk and very low risk on the two tests they ran. My CT pelvic scan in June 2025 showed normal spleen size and no blood clots. I am 65 and take low dose daily aspirin. I have no symptoms and underlying health issues except a very enlarged right ring finger joint that is painless but makes it difficult to write. My O/H also referred me to bone marrow transplant specialist and I have appt early August 2025. I will go as my O/H said bone marrow transplant must be done by age 70 although she said it is not time for one now.