Honestly, I don't know if I have any tips! It was a really rare condition back when I was dx by bone marrow biopsy in the early 90s, and there really weren't very many support groups on-line from which to gather information. I was initially very concerned. At that time, anagrelide was new, and the concerns about long-term usage of hydroxyurea were very high. I used HU for awhile, then tried AG, but had terrible side effects from AG, so went back on HU. I was being treated by a hematologist in Ft. Wayne, IN but decided to travel to Rochester Mayo to see an ET specialist there. He felt that being as young as I was (early 40s by that time) I could manage with only daily 81 mg aspirin. So, I went off HU but soon after had some frightening TIAs. That helped me decide HU would be the best option for me. A decade or so ago I made an appointment with Dr. Tefferi at Mayo Rochester to see if my current treatment protocol was best for me and to learn if I had the JAK2 mutation (which I do). He said I'd likely die of something else before I'd die of ET, so stop worrying! 🙂 Therefore, since that time, I've basically taken my 500 mg HU and 81 mg aspirin daily, gone for quarterly CBCs and regular checkups with my regular hematologist and lived normally. I doubt that anyone much knows I have this blood condition. My advice? Stay active and live happily. If you begin to have an issues, your body will tell you. Otherwise, there are much more serious things in my life to worry about! 🙂 I'm happy to field questions, tho, as it has been a journey with definite ups and downs. It's most frightening when one doesn't have information, I firmly believe!

Jump to this post