← Return to People living with ET and taking Hydrea: Anybody setting records?

Discussion
Comment receiving replies
@colleenyoung

@lefsequeen, I read in another thread that you've been living with Essential Thrombocytosis (ET) and managing well with Hydrea (hydroxyurea) for 30 years now. You may be the record-setter among our group here. @misty45 @carlavan @esperanzam @susanellis @stevehurlburt @huronshores @tresman10 @cblowers1 and others will likely have much to learn from you.

What tips might you have to share about long time management of ET and living life?

Jump to this post


Replies to "@lefsequeen, I read in another thread that you've been living with Essential Thrombocytosis (ET) and managing..."

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!

Great to hear of someone doing well. Cheers. One thing I would say to consider, is how much of a dose of Hydroxyurea a person is on. Personally, my numbers have been up and down. This has resulted in pretty large ‘doses’ of Hydroxyurea. Presently 23x500mg capsules per week. So my concern has been to watch carefully for side effects..hair loss being one etc. At 82 yes I would like to keep other parts of me as healthy as possible.
(also, recently had hip replacement surgery so have been recovering from that, with Physio etc) I think that is probably the case with most of us, that the Essential Thrombocythemia is not the only thing going on. Anyway, it is a relief to have the hip looked after as it was about 2 1/2 .. 3 year wait, due to COVID keeping our hospitals too busy etc. Good luck all.