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

I have passed the 30 year mark now. Honestly, I feel really good at 69, so I don't stress about keeping myself alive forever and just enjoy the present. I stay somewhat active (when I have things I really want to do 🙂 ), I eat pretty much what I want to within reason and don't fuss about the bathroom scale at all. I read a lot and travel a lot. I retired from cooking because it's so time-consuming and messy, coexist happily with dust on my furniture, spend lots of time finding relatives via genealogy MyHeritage, laugh a lot, watch BritBox series, fiddle with my Nordic folk music group, etc. Why obsess about health? Worrying gains me nothing! But that's me!!!!

I hope that somehow turns around. I just moved to 2x500mg three days a week and today I was really tired. Muscles felt like there was just nothing there It’s only been a week on this dosage but it’s definitely heavier the days after the two pills. I’m waiting still for my body to figure it out.

The bruising and bleeding seems scary I’ve not had that happen…. I’m just hopeful this or something else works and thinking about you to send some positive thoughts.

Hi, John! Nice to hear from you. I guess I'm not clear on why docs thought the heart attack was due to ET. Clotting? Did you have blockage or anything? I had a nearly fatal brain aneurysm bleed when I was 54. I'd had the ET dx since I was 39. My neurologist said he didn't see why ET would cause the brain aneurysm hemorrhage, but I personally figured there must be some connection. Anyway, my kids were pretty young when I was dx with ET, but I never really had any side effects from HU or the disease, once I got the chronic anemia fatigue resolved and my blood count numbers stabilized. I worked full-time, was busy with all the 4 kids' activities and sports, etc. Honestly, I doubt anybody knew (knows) I had (have) ET, as I've done what I needed to do to keep track of my numbers and taken my meds, but it hasn't been something I've allowed to hijack my life. I was told not too long ago that I'd likely kick the bucket of something else before ET. I've chosen to go with that!

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.

I actually don't spend much time on this page, but if you have a question, I'll see it in my email inbox. I'll be happy to help out in any way I can. I'm thankful I don't have the symptoms so many people seem to experience. That would be very hard indeed. So I say, carry on, be "mindful" of your condition, and try, if you can, to box it up and store it in a secluded corner of your brain and only open it when necessary. I heard that's how Holocaust survivors carried on. Occasionally they opened the hidden box and dealt with the contents, but otherwise sealed it off as an unnecessary encumbrance to moving forward with life. Get to the point of manageable blood count numbers, and once they are steady over a good, long amount of time, move your energy to happier things!!!!

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.

So glad the HU worked fast for you at that low dose! Re the genetic tests, JAK2 patients have higher incidence of clots, which puts them in a higher risk category, especially patients over 60.

Other mutations pop up with the so called "driver" mutations of MPNs (which are JAK2, CALR, and MPL). Researchers really don't know what they mean, if anything. As far as I know, they are collecting statistical data and following patients with these other mutations to see if they are correlated to progression or increased complications. You might tell your hemo that you would like to participate in a data collection effort if that appeals to you. Mine sends my info in. If your doc participates, s/he might get updates on significant developments quicker.

Thank you, I feel better now knowing THAT I Could have 30yrs up my sleeve

Oh my! Thank you so much for posting this. Recently diagnosed with ET & you really brightened my day!

Jean

I think you were just working too dang hard!!! 🙂 Slow down, chill a bit, lie back in the grass and study the clouds, balance that lifestyle as much as you can. I used to be a Type A busy person, but the brain aneurysm pretty much put a stop to that. Since you've survived a widow maker, hang around with your wife and have fun as much as possible!!!! No sense tempting fate twice! ET....forget about it (within reason :)!

My husband and I had a great trip to Norway in the fall, meeting a lot of my DNA relatives I met through MyHeritage (I got a free 23andMe DNA test and membership because of donating a lot of my ET blood to Mayo for research) and became penpals during COVID. Now THAT was a great time. There are always silver linings to having rare blood!