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

International Prognostic Score for ET
Patient age less than 60 (0 points)
Older than 60 (1 point)

Prior thrombotic event
No: (0 points). Yes: (2 points)

Cardio vascular risks factors
No: (0 points). Yes: ( 1 point)

JAK2 V617 mutation detected
No: (0 points). Yes: (2 points)

Low risk is 0-1
Intermediate is 2
high is 3-6

Eileen

I was diagnosed with ET and I now take Hydrea and .81 aspirin looking for as much information

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!

Though I was diagnosed with ET, and JAK2 this summer, I still hesitate to take Hydrea because of my age (nearly 81) and CBC numbers are still in 600s. Does anyone know what statistics are of life expectancy of those who do not take a chemo drug? Have any studies been done re. this? What exactly is low risk and high risk? Any input you have will be appreciated.

Hi pumpkin1 - the count was around 900,000+, now dropped to just over 400,000.
It tends to fluctuate mildly from one checkup blood to the next, which I have 3 monthly.
As I moved house during the two years my 3 monthly consultations are conducted on Zoom.
The haematologist checks platelets, white and red cell counts plus liver reading.
No dietary restrictions required.
Best wishes for YOUR health - we have years yet to enjoy! AnnO

I found MPN Voice on healthunlocked.com. I was diagnosed with ET JAK2 in June 2022 so I am just starting the journey,
Eileen G. In Pennslyvania

@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?

Hi, Anno, thank you for your input. Can you tell me what your platelet count was when you started with Hydrea two years ago and what it is now? Glad your hair loss has stabilized. Wishing you the best.

Hello pumpkin -I’m also 81 and have been on Hydrae for two years. It took a few months to get the correct dosage, 1 x 500mg too little but 2 x 500mg just too much. I’m now on 2,2,1, regime.
My skin became very dry, red and blotchy plus after a year I started to lose my hair. My haematologist is adamant if I don’t take preventive medication I will suffer either a stroke or heart attack sooner than later.
My hair loss seems to have stabilised, so am reluctant to start an alternative medication. I am not prepared to take the idk, especially an immobilising stroke. AnnO from Australia.