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jfinlay (@jfinlay)

Myelofibrosis

Blood Cancers & Disorders | Last Active: Feb 23, 2020 | Replies (8)

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@gouldh

Hi John, I’ve had PMF for 12 years and was told at diagnosis that I had three to five years to live. So, first order of business–don’t obsess about all the bad things you’ll hear–not that they can’t come true, but that you’ve got plenty to be thankful for. I, too, have had my spleen removed and presently am on HU to moderate my increased platelets and WBCs. I get weekly CBCs to monitor those counts. I’ve had numerous other challenges. If you’re interested, there is an initiative for MPN patients through the company 23andMe by which MPN patients spit in a tube and thus send their DNA to the company in an effort for worldclass researchers (oneof them being Ruben Mesa of Mayo Clinic) to try to find more treatments or cures. My daughter, who works for the company, initiated the project. For more on it, read my post, “My Daughter, Myelofibrosis and Me” at my blog–harveygould.authorsxpress.com. Good fortune. Harvey Gould

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Replies to "Hi John, I've had PMF for 12 years and was told at diagnosis that I had..."

wondering how you are doing now??? I am waiting on results from bone marrow biopsy to confirm diagnosis

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