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@mga

I had ET for over 17 years. I was diagnosed at age 45. After the first 2 years my spleen became intolerably uncomfortable, so was prescribed hydroxyurea - starting at just 3 pills a week... I too let it sit on my nightstand for several days... until I was ready to face a forever change of now being on "chemo". But I realized that I was already at that forever change point with the disease. I did experience a wide roller coaster of side effects from the combination of hydrea and the ET. Some were really uncomfortable, some just a nuisance, and always fluctuating. Yet, for me, all were tolerable. I led an extremely active and physically demanding work lifestyle. Eventually I became resistant to the hydrea, despite having increased to a dose at 20 pills a week. I was then prescribed weekly interferon injections that I was on for 7 1/2 years, still leading the same demanding physical work life style. Only after 6 years of interferon did my platelets finally drop within "normal" range. The interferon alleviated some of the undesirable side effects of the hydrea, and also presented some more difficult effects of its own. You will eventually accept the roller coaster ride. You don't get very far complaining about it - as we all know that with MPN's people will tell you that you "look fine", so you don't expect pity. This June I was diagnosed that my ET has transitioned to very high risk myleofibrosis, so am switched from interferon to Jakafi. Jakafi comes with a list of unwanted side effects too. They have in just 2 months doubled that prescription as well. I can tell you that this stuff is a nothing burger compared to the interferon. So I take the prescription, if it is intolerable, they will work with me to fit the best alternative. I am now given a prognosis of just months unless I get a stem cell pretty urgently. It has taken 4 months to look forward to my next consultation Dec 1 at Mayo, that is unless I transition to AML in the meantime as well (which I am told is apparently pretty likely and a much quicker ending). I dont think, "oh woe is me" at all. I got 17 years because I accepted the managed care plan and lived for each next day. If I hadn't, maybe not so good to let the disease manage things. So for me, on to the next thing. God bless you all, and may you be blessed with good days and the ability to endure any difficulty ahead.

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Replies to "I had ET for over 17 years. I was diagnosed at age 45. After the first..."

God bless you. I will keep you in my thoughts and prayers.