Living with ET

Fatigue is a symptom of ET among other things. You are pretty young that and a lack of blood clots should factor into your Dr.’s assessment of your risk level. Your doctor should be able to explain why your risk profile would merit starting HU now rather than a “wait and watch” approach. I started on HU when I was 69. I could have waited even at my age, but I had a number of symptoms that were becoming a problem. I am on HU since March, and I feel better. Still have symptoms, but they are better too.

I (75 yr) was diagnosed with ET a couple of weeks ago and was started on HU 500mg twice a day. Platlet count was 823. Next week I have another blood test and hopefully will see the platlet count lower. Also positive for the JAK2 mutation. I am on several other meds following a stroke and then a heart attack a couple of years after that. I also suffer from fatigue, but it's hard to draw a direct line to ET as the cause. I think the next step for me is a biopsy; I'll know more next week. Meanwhile i try to enjoy and treasure every day.

It is very scary when they say chemo but in all honesty it hasn't been that bad. I have JAKE 2 I don't know what you were told but my Doctor tells me this is not cancer I am 71 I was told that a person in there 60s would have a survival rate of 30 years. So I hope this helps you . Keep searching here and you should see where that 30 year survival rate is listed. and it is rare to develop into anything else.

For many of us, hydroxyurea not just brings down our platelet count, it relieves the fatigue and headaches of ET.

To be best prepared for whatever your oncologist may recommend, use this forum to learn more about what others have experienced. You can use the search box at the top of the page to find all the discussion on ET.

You're among friends here!

Happy to weigh in as a younger diagnoses person
I was diagnosed at 39 with ET
I am now 68 and just fine living with it. Idk where this 30 year survival rate idea originated from but my research say normal life span as long as it is monitored.

I was started on HU immediately and looking back I feel that was too aggressive for someone my age with no symptoms or health issues.
Long term use of HU can cause problems and I got very bad case of Basel cell carcinoma.
I wish I had gone for another opinion and perhaps considered more seriously the baby aspirin option. The doctors scared me with the possibility of stroke.

I switched to Anagrelide 5 years ago and doing fine with it.

ET was formerly known as a blood disorder NOT cancer. That designation changed in the last few years for whatever reason. (Some say to acquire more research funding)

This is my story and I hope it helps.
How you proceed is your choice and I’m glad you are here asking questions.
So me- I would have stayed off any drugs for this until I was older if I knew then what I know now.

You can live a long healthy life as long as you keep up with your hem and stay vigilant about your health.
Best of luck to you!

Make sure that the biopsy they do is the newer type. My local Doctor does them by hand so to speak. Using a tool that hand drills your back using pressure. They sent me out of town and they used a type of drill and put me out. I had no pain at all.

Hola, buen día. Tengo 42 años y hace 11 UE tomo hidroxiurea. Comencé muy joven.
En mi experiencia personal la hidroxiurea no ha causado hasta el momento efectos secundarios importantes, si tengo fatiga y se me ha caído el cabello (pero tengo aunque su densidad disminuyó bastante). En términos generales te puedo contar que reguló bastante mis plaquetas y vivo una vida normal.
Saludos.

@ tinak123

I am 70 YO, and was diagnosed with ET when I was 50. I was later found to be JAK2+. My then-hem/onc wanted me or start HU and baby aspirin, but I was hesitant about taking HU. So, I started out on anagrelide, which lowered my platelet counts to the normal range for about 8 years. When it stopped being effective, I was then put on Jakafi for about 10 years before I converted to myelofibrosis and had a successful allogeneic stem cell transplant last year. I am not sure about HU or anagralide, but Jakafi does increase your risk for skin cancers. During my time with ET, I was asymptomatic and enjoyed a very active lifestyle. I did develop several squamous cell carcinomas that were successfully removed with Mohs surgery.

After I converted to myelofibrosis, the anemia did start having a big effect on my activity as I started having shortness of breath from the anemia. When I got a second opinion on my myelofibrosis diagnosis and possible treatment options at MD Anderson, the MPN specialist doctor did tell me that the longer one has ET the greater the odds are that it will convert to myelofibrosis as mine had, but he did not give a timeline. When I discussed this with my local hem/onc, he concurred.

All of that said, hopefully you have a good hem/onc that has MPN experience and can guide you on your treatment options. Staying active and keeping a positive attitude is most beneficial IMHO. Good luck!

Had a new test yesterday and platelet count was down to 417 from 823. Certainly headed in the right direction after only 18 days on HU.

I just realized what I said in the other post. What I should have said is that a person should have a normal life expectancy taking HU for ET. . Sorry wasn't taking into account that some people have ET at a much younger age . As for me being 71 I thought even to live 20 more years would be great odds since that would make me 91 but for a 40 year old not so good. Anyway taking HU it is projected to live a normal life span for your age. Good Luck