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

I am new to Connect . Ive registered but never commented before...
I was diagnosed with Essential Thrombocytosis (ET) in 2013. My platelets are stable on 500 mg Hydroxy along with 81mg aspirin per day. I am 75 yrs old and want to stay active and upbeat for many years ahead. Over the past year I have noticed an increase in many other symptoms that doctors don't seem to relate to ET. I live in Alaska and ET seems to be a mystery disease.I have never met anyone up here who struggles with it. I have tried connecting with the MNP foundation but was told you can't discuss symptoms there.
My Oncologist/Hematologist is a really nice person but only seems interested in the blood work giving no attention to my physical complaints. Some of it has been downright frightening lately. Last August I was sent to the ER by my primary care doctor because of high blood CRP levels following a horrible HA with vomiting and neck pain so severe I couldn't move my head for several days. The ER did an MRI of my cervical spine and brain and told me to see a neurologist. When I finally got an appointment with the neurologist, after several months, the neurologist did an EMG and reported that to her surprise I have neuropathy. She also did a mini mental test and told me to return for follow up in 3 months and that the mental check showed signs of mild mental decline. I do have trouble remembering names and easily feeling stressed out when under pressure. I also have Raynaud's syndrome, a lot of bruising and discoloration as well as tingling and pressure in my feet, legs, arms and face . I see a physical therapist when struggling with spinal stenosis and cervical pain . All of this, on top of the shut downs from COVID has changed my life immensely over the past year . A year ago my husband and I were doing Crossfit twice a week. 😊 I don't want to be a complainer. I do want to be well educated and am really hoping to make connection with others with ET and learn more about the disease and hopefully help others. Thank you.

Gracias por contar su experiencia ,yo tengo 49 y tengo que empezar a medicarme por plaquetas altas ,eso que cuenta me da esperanza.

I also started with platelets over one million at age 39. Now I'm 69. I'm also JAK2 positive. After 30 years, I often hear from new hematologists (I've gone through a lot!) that I likely know more about living with the disease than they do, since they don't encounter it very often, especially for someone like me who's had it for 30 years. So, if it's a good doc, generally he/she looks at what I've done to treat it, the success I've had, and tell me to carry on and check in every 6 months. If HU is working at that low of a dose for you, that's great. I'd say that as long as HU is working well for you, try to minimize your stress and not worry too much. No one seems to really have answers to the "why" questions, and you may drive yourself crazy in your determination to figure it out. So I just decided to live comfortably with gray areas in my life!

Hello all! I am new to this forum and I am so glad I happened upon it. It's been so helpful to hear experiences of others that are living with ET. I'm 70, and was diagnosed in November 2023 through routine blood work. Platelets were over one million so I was started on hydroxyurea 500 MG also. Bone marrow biopsy showed JAK2 and also SF3B1 gene mutation. Has anyone else had this result? I can't really get a satisfactory answer from my hematology doctor on the significance on this, and I can relate to some comments I've read here about frustration with the doctors' answers. The HU was very effective in lowering the platelet count with minimal symptoms. Started on 500 MG four a day, and now down to 2 per week, Monday and Friday, and level was in the 300's last week. I'm not as scared as I was at first, largely due to this forum and all your comments! I'm very grateful to learn that this condition can be managed and treated. I do wish my doctor would provide more info in addition to blood levels.

That's amazing and so happy that you've been so active and just making it happen. I hope to emulate that as well as just keeping it to ourselves as I also don't want to be the "cancer person" and then have everything come up and ask "are you alright" every time they see me. A great book actually is "The mindful body" which basically agrees with your mindset and shows studies on how right you are.

For my heart attack the doctors say they can't ever know "for sure" but they say ET was "certainly a contributor" to the heart attack. I had a "widow maker" with a 98% block on my LDA which clearly "caused" the heart. The debate is what caused the blockage, how fast, etc. I had a calcium scan then and another ~3 weeks ago and have a 0 calcium score and my cholesterol is basically perfect according to the books/numbers...The going theory is that fibrous and fat can build up in arteries since you are 8 years old and even with healthy living it naturally occurs. Apparently stress (work, lack of sleep, etc) can make that worse. I worked 60-80+ hours weekly from ~2005-2020. So then add that I've had high platelets since 2012 and they think it just built up despite good numbers. So they say ET was a "contributor".... but if I was living a more balanced lifestyle it may never have happened.

Overall I'm very inspired by your experiences and have shared your story already with my wife, mom and friends. I hope to see more from you and others on this connect community as we go.

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!

Hello all! I am new to this forum and I am so glad I happened upon it. It's been so helpful to hear experiences of others that are living with ET. I'm 70, and was diagnosed in November 2023 through routine blood work. Platelets were over one million so I was started on hydroxyurea 500 MG also. Bone marrow biopsy showed JAK2 and also SF3B1 gene mutation. Has anyone else had this result? I can't really get a satisfactory answer from my hematology doctor on the significance on this, and I can relate to some comments I've read here about frustration with the doctors' answers. The HU was very effective in lowering the platelet count with minimal symptoms. Started on 500 MG four a day, and now down to 2 per week, Monday and Friday, and level was in the 300's last week. I'm not as scared as I was at first, largely due to this forum and all your comments! I'm very grateful to learn that this condition can be managed and treated. I do wish my doctor would provide more info in addition to blood levels.