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Newly Diagnosed Essential Thrombocytosis

Blood Cancers & Disorders | Last Active: Mar 25 12:02pm | Replies (7)

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@dewz13
I’m still trying to wrap my head around it all. I’ve probably had it for years and had no clue. I just hate the feeling now that it’s going to loom over me for the rest of my life. My emotions are all over the place. The “C” word is terrifying at times. One minute I’m “I’ve got this” and the next minute “Im going to die”. I think a lot of my emotions come from having blood cancers on BOTH of my parents siblings side. Maybe I’m just adjusting and these feelings are all normal. I’ve read so many side effects of the chemo meds. I’m praying I don’t have to take them😞. I’m probably overreacting. Like I said…. My platelets have been high as far back as 2017 (that I can see on my portal” and I’ve known I had a low percentage Jak2 mutation for almost 6 years now. Went to an oncologist back then and his words were “why are you here?” 😞😞

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Replies to "@dewz13 I’m still trying to wrap my head around it all. I’ve probably had it for..."

@sdcgcarroll
I hope your feelings are normal because that is EXACTLY how I have been…terrified then “it’s ok”
You will probably be put on Hydrea as that is what I have seen here and that is what I am on. Seems like most people get blood work every 2 weeks to monitor (I was surprised by this). I have my first follow up appointment next week and have lots of questions but my platelets have already come down some so I am feeling encouraged. Not sure if it is from the iron pills (very low Ferritin) or the Hydrea.
I’m sorry your previous oncologist was so unhelpful. But I think you are on a path to manage your “disorder” now.