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Mon, Oct 21 5:59am · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

We may be on to something. I have blamed it on my COPD, however I don't need daytime oxygen. But I sound like both of you and go to bed by 6:00, just to rest. It is nice to know that it could be not in our head. I hate being lazy. lol

Sun, Oct 6 9:49am · New dx of Post ET-MF in Blood Cancers & Disorders

Hi Becky, my name is Carla & I am 78 years old with Essential Thrombocytosis and Jak 2 mutation. I was diagnosed about 1 & 1/2 ago. I have always been a doer and busy all of my life but the last 5 years, was extremely tired by late afternoon (in bed by 6:00 p.m..) lots of headaches. No one could find out what was wrong until my platelets started rising about two years ago. I am now on Hydrea (a chemo pill) and 81 mg. aspirin that attacks the platelets and keeps them in the normal range. I am still tired often, I still have headaches, but over the counter medicines help and I am very grateful to know that I will most likely die with this cancer and not from it! I still have all my hair, I am thankful and grateful everyday & I wish the very best for you. I truly believe if we learn to live with our diseases, they will not consume us and we can continue to be productive. By the way, just a side note, often I still go to bed at 7:00, but I love horses and muck stalls when the weather is nice and love to work in the garden and can my produce. I hope you keep in touch!

Tue, Sep 24 6:14am · CalR mutation ET and constitutional symptoms in Blood Cancers & Disorders

Hi, my name is Carlavan and I to have ET with JAK2 mutation, my initial complaint to my primary was always extreme tiredness, headaches, and itchy dry skin. I too, thought thyroid. But after repeated blood workup & over time, she noticed elevated platelets and ordered a referral to a hemotologist who did the extreme blood testing at a lab in Texas. The diagnosis of ET and mutation was given and I was put on Hydroxya and 81mg aspirin. It is a chemo pill that destroys platelets and brings my counts within a normal range under 400,000. I am still tired, but I go great until about 7:00 at night. Skin is still a problem and the occasional headache. But all and all, I look around me each day and know it could be much worse. Good luck to you and I would seek a second opinion. I would want treatment if I were you.

Fri, Apr 5 1:12pm · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

My Doctor wants my platelets below 400,000, in order to accomplish that it was necessary for me to be on Hydrea 500mg 3days a week and 81 mg. aspirin daily. I must add that I also have Essential Thrombocytosis, Hope this helps. My understanding is below 400,000 cuts the risk of blood clots significantly. Hope I am of help. When in doubt, I always believe in second opinions. Blessings

Thu, Apr 4 7:37am · ET - Essential Thrombocythemia & Fainting in Blood Cancers & Disorders

Hi there, I also have ET & JAK2 but with no symptoms other than high platelets. Controlled with Hydrea and 81mg aspirin. It is possible your fainting is related to other issues too. I would certainly agree with others to talk to your doctors so you can do more investigating. Best wishes!

Fri, Mar 15 7:09am · High platelet count in Blood Cancers & Disorders

Hi, I was recently diagnosed with Essential Thrombocytoss (ET) and Jak2 mutation, after elevated platelets over a period of a year. This through extensive blood testing. I have been on Hydrea 3 times a week at 500mg each and daily 81mg aspirin. I don't feel any different before or after diagnosis and have to look at it as a positive not a negative. I will die with the disease not from it! I strongly advise your son to seek another opinion so that he could benefit from medication to lower the platelets. Well wishes to him!

Sun, Jan 20 9:21am · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

Hi, I'm jumping in because I have ET with Jak2 positive. I am on Hydrea 500mg a day, 4days a week and a aspirin daily. I don't think I am having side effects but I also have COPD & new stomach issuses , which the stomach upset could be related to the Hydrea but there has been no confirmation.

Dec 26, 2018 · JAK3 in Blood Cancers & Disorders

No, I am very active for my age. My only complaint is and as been for the last several years is tiredness, yet blood tests show no reason for that. I am active all day but go to bed at 7pm and sleep until 6:00 in the a.m. guess that isn't a real problem. :]