Update. Good morning. I was diagnosed 2 1/2 years ago. At the time, both the diagnosis and treatment options were all so scary. Not so now. My hematologist/oncologist at the University of Virginia is wonderful. She advised that treatment would be the same whether my diagnosis is ultimately ET or pre-fibrotic myelofibrosis. I take hydroxyurea every day along with baby aspirin. I have no side effects and feel quite good. I play tennis multiple days each week and keep a very active travel and volunteer schedule. All bloodwork is now within normal ranges. I have blood drawn every three months and see my doctor every six. Also good news.
Will the condition progress? Perhaps, but there is no way of knowing, and as long as the current regimen works we see no reason to change it. I am now 74 years old. I encourage everyone, especially the newly diagnosed to maintain hope and recognize that many, many people do very well with these conditions.