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DiscussionHow did you make the final decision to begin HU protocol for ET?
Blood Cancers & Disorders | Last Active: Jan 22, 2023 | Replies (75)Comment receiving replies
Replies to "Glad to hear your maintenance dose is so low! Do you know your driver mutation? I..."
Hi, I apologize however, I don’t know what you mean by driver mutation, can you please elaborate on the definition?. I am JAK II positive and when I was first diagnosed, this test wasn’t even available so the way they would discover if you had ET was ruling out every other blood disorder first, and if you didn’t identify with another blood disorder, and your platelets were still high, then your diagnosis was ET. The bone marrow biopsy showed several other disorders that I could develop which was upsetting at first. The doctor mentioned that although I have these markers, it doesn’t mean that I will develop any of the other disorders. The bloodwork would give him any indication if I were developing another disorder which would require further evaluation and so far everything is good! I live in Orange County, CA and had joined a blood disorder group whose members lived mostly in the Los Angeles area. It was a great comfort to be surrounded by people who had the same or similar disorders to mine. It really helped hearing their stories, and seeing what they had done during the course of their disease and what treatments they were on. I haven’t been for a few years though. I do like the fact that you are still having your blood checked every few months, even though you only see the doctor once a year. I think this is a great idea, and will suggest it to my oncologist when I see him next year. Thank you!