Hi @crsimon5 ,
Thank you for sharing your story in detail. I have CALR mutation also, but just turned 67. I was diagnosed with ET 1/2025 after being referred to O\H because routine physical showed high platelets and slightly high white cells on lab work. I asked for a bone marrow biopsy(which in hindsight was not wise) and it showed some scarring so that same O/H changed my diagnosis to primary myelofibrosis and wrote, “you might be transitioning to overt myelofibrosis now”. She may have thought that because the STAT lab work that day right after the bone marrow test, my red cells were low and my platelets had gone down 400 with me taking nothing and doing nothing differently. Her second diagnosis was disturbing to me, but I really did not believe it. I repeated my bloodwork about three months later and it was back to high platelets, normal red cells, and slightly high white cells. I repeated my labs right before seeing the MPN specialist in July and my lab work remained the same, high platelets, normal red cells, and slightly high white cells. I have absolutely no symptoms to this day a little over a year and a half since being told I have blood cancer and had none then either. I saw a MPN specialist this past July and that was not a positive visit like yours was. The MPN specialist had not even read my chart and thought I had JAK2 mutation! (probably because that is the most common mutation plus she is an expert in it and claimed she helped discover the JAK2 gene when she was a student at Stanford) I showed her my copy of my NGS report (which she obviously had not read in my chart) which showed CALR and no JAK2 mutation and she acted like it was bad data and she wanted to repeat it there. My insurance covered only a consultation with her that day and I did not care to pay for testing again there, even if it was covered by my insurance, as I honestly felt it might be adjusted to show what she wanted to find. That is how creepy my visit was there and I will not ever be returning. I continue doing my busy daily routine which includes lots of exercise, following a Mediterranean diet, and remembering God will do things according to His plan. I know there are many new developments happening in CALR research and trials and if I ever get symptoms, I might be inclined to take something specifically found to benefit CALR mutation rather than a med for just cytoreduction which I do not take and have never taken.
Thank you for listening and providing the link.
Wishing you a blessed day.