Hi @hughp,
I know it is not fun being told we have myelofibrosis. I went for a routine physical in December 2024 and my lab work showed high platelets so I was sent to oncologist/hematologist. I had and still have no symptoms. She diagnosed me with ET in January 2025 which she changed to PMF in February 2025. I had a pelvis and abdomen CT scan in May 2025 and my spleen was found to be of normal size. She sent me to a bone marrow transplant specialist who I saw in August 2025 and specifically asked if age was an issue if I ever needed a bone marrow transplant in the future. He told me age does not matter but person’s health and fitness does. I was 65 at the time and he said I was in no need of a bone marrow transplant then and may never need one. He works for City of Hope in Duarte, CA , so I consider him reputable. I thought seeing a MPN specialist might be a good idea so I changed insurance in January 2026 so I could see one as my previous insurance had none and was the reason I was sent to bone marrow transplant specialist. Unfortunately, I was extremely disappointed with my visit with MPN specialist. I will leave it at that.
Have you done NGS testing and know what mutations you have? Have you had risk analysis for myelofibrosis, something like DIPS and MIPS?
It is great you are advocating for yourself. Keep on searching for the options that are best for you. It might even take more than two opinions to find a doctor I am comfortable with is what I have found.
Stay positive, do what makes you happy, pray, and keep on walking!