I have E.T. with positive JAK2 gene mutation.

I am 72 and was diagnosed with the same disorder one year ago. I sometimes have the same issues. Exercise helps with the fatigue....a walk, strength training, avoiding a sedentary life. When I cannot sleep, I pray, and it helps me..... Not sure if brain fog is a function of the disorder, the meds or my age. This blog helps us all to know we are not alone. God bless you and hope you find relief and help.

Yes to brain fog and insomnia. Is it hydroxyurea (HU), ET, getting hit with a rare disease diagnosis, or a combo of all three? No one knows, and hematologists aren't interested if they can't see it, feel it, hear it, or measure it on a test.

My GP has been more helpful.

I urge the newly diagnosed to draw on their "inner resources," whatever gives you joy and pulls you out of yourself. Think of your favorite activities, places, and people.

Also, get some kind of exercise every day; seems counterintuitive, but when fatigue hits (and I think brain fog is mental fatigue), moving helps.

It will get better as your platelets stabilize and you realize ET is manageable.

I'm 76 and was diagnosted the ET JAK2 last April; platelets were 552. . My platelet count every 3 months has been 462, 479, 543, 536. I only take a 81 mg baby aspirin. I feel great...no problems. My hematologist has been wonderful explaining everything. Every 3 months he calls me after my blood work to discuss the levels and to ask me about any symptoms I may have: itchy skin, extreme nigh sweats, feeling full before meal time (apparently it could be an enlarged spleen), unexpected weight gain, can't remember if he asks me anything else. He also said most people die with the disease not from the disease. Best of luck to you.

I am almost 74, diagnosed w/same 3 years ago w/platelets at 707. Took 500mg Hydroxyurea 1x/day for about 2.5 years. Numbers came down (500s) but went back up to 6+700s so now I take an extra pill 2x/wk (so total 9 pills/wk) and a baby aspirin each day. I have not experienced fatigue but I have always been high energy…and maybe that’s why I sleep ok too. I do find my forearms itchy occasionally—i use alcohol and cotton pads to provide relief. I also do spend time in the sun as i live in Hawaii. I sometimes feel like my shins are sunburned, but it goes away after a short while. I also have “fantom” sensations, like the sense that a thread is hanging from my shorts… when I check, nothing there, and the feeling goes away. These sensations are limited to my lower legs and ankles (so far). Brain fog I think is from COVID… i had it before this condition was discovered. After 3 years I feel good about this diagnosis and prognosis. I am blessed w/an excellent doctor.

I have the fatigue and I take 2 HU aday alternating with 3 HU every other day. Anyone having problems with nosebleeds????? I take meloxicam daily for osteo arthritis plain and I read it can cause bleeding. wonder if thats causing it.

I was just diagnosed the beginning of March this year. JAK2 positive, platelet count was 1027. Apparently it had been rising for at minimum the past 3 years, but no one in my PCP's office noticed the abnormal lab results sent to them when I had hip and knee replacement surgeries during that time period. I am taking 500mg of Hydroxyurea twice daily every day. Had a bad reaction one week in, a couple days after having an infusion for my osteoporosis. Not sure how we'll handle that next March when I get my next infusion. Anyone else have experience with that? My infusion is Zoledronic Acid, 1mg. I have great confidence in my young oncologist. He is referring me to another clinic, Fred Hutchinson Cancer Center in Seattle, for a second opinion. Kind of has a leave no stone unturned approach about him. My spleen is fine, but 30% of my bone marrow has fibrosis grade 2, 70% is grade 1. I keep telling myself and family/friends that if you have to have a cancer, this one doesn't seem too bad. I have noticed that in the 2 months since my bone marrow biopsy that the site seems a bit tender, has a dull steady ache to it deep down. Anyone else experience this? I'm grateful I stumbled on this site last week.

@kc7adk54 I also have occasional deep aches, dull pain at my bone marrow biopsy site. Mine was done in Feb of this year so hoping it diminishes over time. I’m on Hydrea 500 mg daily with few side effects… Occasional shin pain, light headedness, dry skin. I feel best when I get enough sleep at night— 10 hours seems to be the number. I also have hereditary hemochromatosis - so I’m guessing the monthly phlebotomy treatment is also helping to platelets. Take care!

@kc7adk54 When I had my bone marrow biopsy, I actually couldn't walk after it the pain in my hip was so bad! That inability to walk only lasted the day, but the pain stayed with me for about 4 or 5 months in varying strengths. It is all gone now (thank goodness) but I am telling you this only to let you know that you are not alone. And it may go away soon. Here's hoping!

Hello. I’m new to this sight. I’m a 75 year old female diagnosed with ET JAK2 this past month. Platelets at 920. I’ve been very active as USTA tennis player with team taking 3rd in National this February. I was battling fatigue thru out the tournament attributing it to age. Ha…now I know. Started Hydroxyurea 500 daily and had terrible headaches, dizziness, brain fog constipation …also strange sensations in feet After one week Dr cut me back to every other day until I adjust. I drink tons of water which helps with the detox and early morning headaches. I will work with my naturopath to support detoxification pathways. I have not been able to play sports as I’m worried I could hurt myself. I do walk and garden which brings me joy. Moving and getting out in nature is so good for all of us. Best of luck to everyone and glad for this site to connect to others having this life changing diagnosis.

@kc7adk54 Thank you for your hugs and kindness. I haven't experienced any bleeding, but still early in the journey for this 72 year old.