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JAK2 Mutation - Effects and Questions

Blood Cancers & Disorders | Last Active: Jun 19 5:59am | Replies (303)

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@scottmatteo

My father passed away from a battle of myelofibrosis (MF), over 10 years after being diagnosed with enlarged spleen and 6 from diagnosis of MF. I am nearly 9 months post immunotherapy treatment for stage 3 melanoma treatment (discovered in lymph nodes without known source). During a post treatment CT scan the radiologist identified my enlarged spleen, which is not typical of melanoma, but could be a side effect of immunotherapy (very rare and limited literature). My oncologist was dismissive of the genetic potential for me to have MF, like my father. Additional observation of my spleen showed continued growth and my oncologist finally discussed with another who suggested a JAK2 mutation blood test. You can see where this is headed; I was notified yesterday that I have the JAK2 gene mutation. I am 47. I am in good health; other than previous melanoma (nearly 2 years from discovery) that I have battled and praying for a very good prognosis on that front shortly! My melanoma specialist is being reassigned and I will be headed to another hematologist that is very familiar with my family history of cancer. As my medical group sends test results directly to the patient as soon as they are received I have yet to discuss with my Dr. I presume I will have a bone marrow biopsy to determine stage, if any, at this point. I am jumping to the MF diagnose myself; treatments for early stage, ongoing studies or any suggestions to extend this wonderful life are appreciated. As with melanoma, the treatments are expanding by the day, I will not hang my head in fear, but give this godforsaken disease a damn good fight. Too much to live for to live in fear.

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Replies to "My father passed away from a battle of myelofibrosis (MF), over 10 years after being diagnosed..."

@scottmatteo I, too, have myelofibrosis. diagnosed by Mayo almost 6 years ago. But at that time, Mayo said there was no need to try treatment, as I would die soon, anyway. So I just keep going with my stockpile of MM and other AI stuff (FKTN, FKRP, CJD, GSN, CALR. BE, BCAN, etc.). And my doc refuses to talk about it, and the Willamette Samaritan treatment pattern remains the same. "If you ain't dead yet, you don't need treatment."