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Question about how you each received your diagnosis of MPN
Blood Cancers & Disorders | Last Active: Jul 16 3:36pm | Replies (6)Comment receiving replies
I was diagnosed with high platelets after a blood test in January 2025. My previous July 2024 blood platelet results were 250 and consistently the same over many years. My PCP thought the higher value, 450 , could be a lab error , but the repeat test confirmed the higher value. She referred me to a hematologist who tested for genetic mutations which came back positive for JAK2 at 6%. The hematologist concluded that positive result confirmed that I have Essential Thrombocythemia and she prescribed Hydroxyurea 500mg every other day. She said I didn't need Bone Marrow evaluation because those results would not change her treatment decisions. During my diagnosis appointment I was not told I had blood cancer and was told that my disease was congenital from birth as a genetic defect which was hereditary. Doing research on Hydroxyurea I discovered that it is chemo and I wondered why I was prescribed chemo. That is how I found out that I have blood cancer. I also discovered that the JAK2 mutation is not genetic defect from birth as described in the handout she gave me, but that JAK2 is a mutation that results for unknown reasons. I walked out of that appointment with a "watch and wait" conclusion that before I left the premises was changed to treatment with Hydroxyurea. Strange.
I went to Mayo Clinic for a 2nd opinion since Mayo is considered the best resource for blood cancer treatment. My new doctor said that only 6% JAK2 cells in the blood sample did not confirm an ET diagnosis and he said that a 30% JAK2 result would be more significant. He recommended a Bone Marrow biopsy for further information which I did with little discomfort. There were no other issues to discover for current or future probabilities, so I am continuing the same drug and dosage.
My last blood test a few months ago had reduced platelet count of 350 after only 10 pills and I have no side effects from the Hydroxyurea. I do not have any symptoms and continue a healthy 76yo lifestyle of activities every day .
I will continue my 3 month blood tests and telehealth visits with my Mayo doctor and in person visits 1-2x per year.
That's my story and I hope it helps .
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Thank you to those who shared their story. It is quite evident that I need a second opinion with a qualified doctor in MPNs who can explain my situation to me. Strangely, I feel what I exactly have is not exactly known by my O/H and my Medicare Advantage Plan has no MPN specialists, just bone marrow transplant specialists. I do know my O/H said she talked on the phone with the pathologist who read my results who said my “bone marrow biopsy looks more like primary myelofibrosis”. Then I received a message in my kp.org from my O/H saying that “you might be transitioning from prefibrotic myelofibrosis”. The day of my bone marrow biopsy only I was required to do STAT blood work that turned out really strange with lowered platelets by about 400 but still high and slightly lower than normal hemoglobin, 11.1. All five other labs I have done from December 2024 to May 2025 show higher platelets and normal hemoglobin ranging from 11.6 to 12.7. My other cells fluctuate greatly too and graphed look like zig zags which make impossible to draw to straight line through the points. This all seems so strange to me as I have done nothing differently and do not take any meds, no Hydrea ever in my life! I had never even heard of it until it was prescribed to me my my O/H in January 2025 and 500 mg twice each day seemed quite high to me to begin with. I never even filled it! I now take low dose daily aspirin as I do have high platelets. I am great full to feel fine with no symptoms and my normal good energy; however, it is very frustrating for me not to understand how my diagnosis is being determined as well as not to to feel comfortable with my O/H and her knowledge about what I have. She doesn’t like to be questioned I know! She referred me to bone marrow transplant specialist but I am not sure that is who I should be seeing next. I certainly do not care and would never consider doing a bone marrow transplant without knowing what I exactly have going on! Thank you for listening and sharing. Have a blessed day doing what you enjoy.