Wishing you all the best your story is quite similar to mine. When my doctor asked me what I did different in 2021 when my blood started going wonky the only thing I could think of was the Covid shot. I am on the hydroxyurea and so far not too many side effects. I cannot deal with however it is a chemo, and I hate the thought of having to take it for a long time. Best wishes.
I was just diagnosed with Jak2/ET and had a bone marrow biopsy that ruled out other cancers . My levels are 450 to 510 now , but my Oncologist/Hemo acted like she wasn’t very familiar with this disease , so I’m getting another opinion from specialists in Blood disorders . I spoke with a specialist friend and she said there is nothing that I did at all to cause this . I just had a gene mutation (Jak2) that attacked my platelets and made them multiply . I had blood draws that ruled out infections , anemia, etc . Nope , I was just unlucky . They call this “The Old People’s Disease) and people from 60-80 get it . Well , I’m 69! . Haven’t started on HU yet , only 2 baby aspirin until I switch doctors or my platelets increase a lot more . So far though , a horrible headache , dizziness, mouth sores and fatigue. I was told only .01% of the population have this, but it seems like from this blog , that number is wrong 😑 .
I was just diagnosed with Jak2/ET and had a bone marrow biopsy that ruled out other cancers . My levels are 450 to 510 now , but my Oncologist/Hemo acted like she wasn’t very familiar with this disease , so I’m getting another opinion from specialists in Blood disorders . I spoke with a specialist friend and she said there is nothing that I did at all to cause this . I just had a gene mutation (Jak2) that attacked my platelets and made them multiply . I had blood draws that ruled out infections , anemia, etc . Nope , I was just unlucky . They call this “The Old People’s Disease) and people from 60-80 get it . Well , I’m 69! . Haven’t started on HU yet , only 2 baby aspirin until I switch doctors or my platelets increase a lot more . So far though , a horrible headache , dizziness, mouth sores and fatigue. I was told only .01% of the population have this, but it seems like from this blog , that number is wrong 😑 .
I was just diagnosed with Jak2/ET and had a bone marrow biopsy that ruled out other cancers . My levels are 450 to 510 now , but my Oncologist/Hemo acted like she wasn’t very familiar with this disease , so I’m getting another opinion from specialists in Blood disorders . I spoke with a specialist friend and she said there is nothing that I did at all to cause this . I just had a gene mutation (Jak2) that attacked my platelets and made them multiply . I had blood draws that ruled out infections , anemia, etc . Nope , I was just unlucky . They call this “The Old People’s Disease) and people from 60-80 get it . Well , I’m 69! . Haven’t started on HU yet , only 2 baby aspirin until I switch doctors or my platelets increase a lot more . So far though , a horrible headache , dizziness, mouth sores and fatigue. I was told only .01% of the population have this, but it seems like from this blog , that number is wrong 😑 .
ET is indeed very rare. You'll find so many of us here because this forum brings us together from all over the world.
For most of our primary care physicians, each of us will be the only ET patient in her or his career. So it's really hard to get the info we need, especially when the diagnosis leaves us in shock.
That's why it's great you've found this forum! Here is where your questions will be answered.
Alas, ET isn't just for our golden years. It occurs in young people too. I really like that you've been assured: There is NOTHING we do to cause ET. Nobody understands yet what sparks the mutations that drive ET.
To encourage you: HU will probably ease your ET symptoms (headaches, light-headedness, fatigue). It's true, your platelet count isn't extreme, but you might welcome the relief HU can bring.
I was officially diagnosed with ET this spring and tested positive for JAK2. 53 years old, I am living in Japan, and on .5 mg Anagrelide three times a day (1.5 mg total). I started out at 1 mg, but my platelet count kept gradually climbing. It went over 700,000 in November, and then my dose was increased. I'll find out in four days how it's working. Last spring I had rolling migraines and odd neck and eye pains, but they completely stopped within two weeks of being prescribed 100 mg of aspirin daily. Until recently, I didn't feel anything out of the ordinary, but since the cold weather hit, I've been getting tingles in my hands and feet from time to time. I'm also a lot more fatigued, but I also have Crohn's and that could be a big reason. I try to walk two miles a day if I can, and about once every half an hour or so, I do leg lifts, stretches, or squats to keep things circulating. The hospital found a few clots in my lungs, so I am also taking 10 mg of Eliquis per day. It's been a roller coaster since last January when I started getting migraines and other pains. At least I can say I'm not hurting as much as I was. Looking forward to hopefully getting things under control in the near future.
I was officially diagnosed with ET this spring and tested positive for JAK2. 53 years old, I am living in Japan, and on .5 mg Anagrelide three times a day (1.5 mg total). I started out at 1 mg, but my platelet count kept gradually climbing. It went over 700,000 in November, and then my dose was increased. I'll find out in four days how it's working. Last spring I had rolling migraines and odd neck and eye pains, but they completely stopped within two weeks of being prescribed 100 mg of aspirin daily. Until recently, I didn't feel anything out of the ordinary, but since the cold weather hit, I've been getting tingles in my hands and feet from time to time. I'm also a lot more fatigued, but I also have Crohn's and that could be a big reason. I try to walk two miles a day if I can, and about once every half an hour or so, I do leg lifts, stretches, or squats to keep things circulating. The hospital found a few clots in my lungs, so I am also taking 10 mg of Eliquis per day. It's been a roller coaster since last January when I started getting migraines and other pains. At least I can say I'm not hurting as much as I was. Looking forward to hopefully getting things under control in the near future.
I was officially diagnosed with ET this spring and tested positive for JAK2. 53 years old, I am living in Japan, and on .5 mg Anagrelide three times a day (1.5 mg total). I started out at 1 mg, but my platelet count kept gradually climbing. It went over 700,000 in November, and then my dose was increased. I'll find out in four days how it's working. Last spring I had rolling migraines and odd neck and eye pains, but they completely stopped within two weeks of being prescribed 100 mg of aspirin daily. Until recently, I didn't feel anything out of the ordinary, but since the cold weather hit, I've been getting tingles in my hands and feet from time to time. I'm also a lot more fatigued, but I also have Crohn's and that could be a big reason. I try to walk two miles a day if I can, and about once every half an hour or so, I do leg lifts, stretches, or squats to keep things circulating. The hospital found a few clots in my lungs, so I am also taking 10 mg of Eliquis per day. It's been a roller coaster since last January when I started getting migraines and other pains. At least I can say I'm not hurting as much as I was. Looking forward to hopefully getting things under control in the near future.
Yes, moving helps with the tingles in the extremities! I do yoga most days and have a stationary bike. Also helps with fatigue. Hoping your treatment continues to help improve your quality of life.
I was officially diagnosed with ET this spring and tested positive for JAK2. 53 years old, I am living in Japan, and on .5 mg Anagrelide three times a day (1.5 mg total). I started out at 1 mg, but my platelet count kept gradually climbing. It went over 700,000 in November, and then my dose was increased. I'll find out in four days how it's working. Last spring I had rolling migraines and odd neck and eye pains, but they completely stopped within two weeks of being prescribed 100 mg of aspirin daily. Until recently, I didn't feel anything out of the ordinary, but since the cold weather hit, I've been getting tingles in my hands and feet from time to time. I'm also a lot more fatigued, but I also have Crohn's and that could be a big reason. I try to walk two miles a day if I can, and about once every half an hour or so, I do leg lifts, stretches, or squats to keep things circulating. The hospital found a few clots in my lungs, so I am also taking 10 mg of Eliquis per day. It's been a roller coaster since last January when I started getting migraines and other pains. At least I can say I'm not hurting as much as I was. Looking forward to hopefully getting things under control in the near future.
I too had ET due to a JAK2 . Platelet count got to 800,000. I had migraines also which cause weakness like a stroke. Then I needed treatment before heart surgery to replace my aortic valve. I was scared to be on chemo initally but then I lived on Hydroxyurea for 7 years comfortably with minimal side effects. Ultimately I qualified for a stem cell transplant as the cells which were producing the excess platelets finally stopped producing platelets and they also took over my bone marrow. My 1 year anniversary is in 2 months.
I was told by my original oncologist that you can live 20 years with ET. There are many different paths we all take and I'm sure yours will be unique! Hopefully with minimal side effects!
64 year old black female just wondering were this is coming from. I contribute this to having the covid vaccination as my blood work was always good until I took the shoot. I will start taking hydrea 500 this week. A lot of unknown information. Can I still work, will I live a normal life i am active had plans to retire and travel in the next 2 years just so afraid and mad.
Hello- Being afraid and mad is ok. I went down the same path about 6 years ago. My Hemotologist was exceptional and I refused drugs until the Covid virus vaccine kicked my platelet count to 1600. The doctor put me on Hydroxy 500 mg and the count came down to 600 and has been stable as long as I take the pills. We travel widely and I work part time Jan to April. I hope my experience helps assuage your concerns. We feel blessed to have an active life at 77 for me and 75 for my lovely wife of 51 years. Please private message me if I can help.
Merry Christmas,
Dave L
I just turned 67, and was diagnosed with ET JAK2 a few months ago. Although I’m bummed it does answer questions I’ve had about symptoms like headaches, fatigue, dizzyness and even wierd eye symptoms. I started taking 81 mcg aspirin, but then was also having heart rate issues. So now I’m told I have mild atrial fibrillation and have been put on Eliquis and taken off of the aspirin. I do have to say that it helped some of my symptoms and is supposed to be the gold standard for preventing blood clots. And, finally, yesterday I started HU 100mg. Woke up this morning feeling bone achey and headache. I’m hoping those symptoms get better. I’ve also started seeing a naturopathic oncologist in addition to my MPN specialist. I’ve started taking quercetin and curcumin. I’m considering reveratrol. Has anybody else had similar conditions (cardiac and ET); and/or taking complementary medicines/supplements with good results? Thank you
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I was just diagnosed with Jak2/ET and had a bone marrow biopsy that ruled out other cancers . My levels are 450 to 510 now , but my Oncologist/Hemo acted like she wasn’t very familiar with this disease , so I’m getting another opinion from specialists in Blood disorders . I spoke with a specialist friend and she said there is nothing that I did at all to cause this . I just had a gene mutation (Jak2) that attacked my platelets and made them multiply . I had blood draws that ruled out infections , anemia, etc . Nope , I was just unlucky . They call this “The Old People’s Disease) and people from 60-80 get it . Well , I’m 69! . Haven’t started on HU yet , only 2 baby aspirin until I switch doctors or my platelets increase a lot more . So far though , a horrible headache , dizziness, mouth sores and fatigue. I was told only .01% of the population have this, but it seems like from this blog , that number is wrong 😑 .
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10 ReactionsSo sorry. Hope you feel better soon.
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3 ReactionsWelcome to the ET club.
ET is indeed very rare. You'll find so many of us here because this forum brings us together from all over the world.
For most of our primary care physicians, each of us will be the only ET patient in her or his career. So it's really hard to get the info we need, especially when the diagnosis leaves us in shock.
That's why it's great you've found this forum! Here is where your questions will be answered.
Alas, ET isn't just for our golden years. It occurs in young people too. I really like that you've been assured: There is NOTHING we do to cause ET. Nobody understands yet what sparks the mutations that drive ET.
To encourage you: HU will probably ease your ET symptoms (headaches, light-headedness, fatigue). It's true, your platelet count isn't extreme, but you might welcome the relief HU can bring.
You're among friends here.
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Like -
Helpful -
Hug
12 ReactionsI was officially diagnosed with ET this spring and tested positive for JAK2. 53 years old, I am living in Japan, and on .5 mg Anagrelide three times a day (1.5 mg total). I started out at 1 mg, but my platelet count kept gradually climbing. It went over 700,000 in November, and then my dose was increased. I'll find out in four days how it's working. Last spring I had rolling migraines and odd neck and eye pains, but they completely stopped within two weeks of being prescribed 100 mg of aspirin daily. Until recently, I didn't feel anything out of the ordinary, but since the cold weather hit, I've been getting tingles in my hands and feet from time to time. I'm also a lot more fatigued, but I also have Crohn's and that could be a big reason. I try to walk two miles a day if I can, and about once every half an hour or so, I do leg lifts, stretches, or squats to keep things circulating. The hospital found a few clots in my lungs, so I am also taking 10 mg of Eliquis per day. It's been a roller coaster since last January when I started getting migraines and other pains. At least I can say I'm not hurting as much as I was. Looking forward to hopefully getting things under control in the near future.
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6 ReactionsYour activity level is inspiring! What a great suggestion, to stretch and get blood pumping throughout the day.
Here's hoping your upcoming bloodwork shows more progress.
But if your platelets are still not quite where you want them to be -- hang in there. You're doing everything right! Better days are coming.
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7 ReactionsYes, moving helps with the tingles in the extremities! I do yoga most days and have a stationary bike. Also helps with fatigue. Hoping your treatment continues to help improve your quality of life.
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7 ReactionsI too had ET due to a JAK2 . Platelet count got to 800,000. I had migraines also which cause weakness like a stroke. Then I needed treatment before heart surgery to replace my aortic valve. I was scared to be on chemo initally but then I lived on Hydroxyurea for 7 years comfortably with minimal side effects. Ultimately I qualified for a stem cell transplant as the cells which were producing the excess platelets finally stopped producing platelets and they also took over my bone marrow. My 1 year anniversary is in 2 months.
I was told by my original oncologist that you can live 20 years with ET. There are many different paths we all take and I'm sure yours will be unique! Hopefully with minimal side effects!
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Like -
Helpful -
Hug
4 ReactionsHello- Being afraid and mad is ok. I went down the same path about 6 years ago. My Hemotologist was exceptional and I refused drugs until the Covid virus vaccine kicked my platelet count to 1600. The doctor put me on Hydroxy 500 mg and the count came down to 600 and has been stable as long as I take the pills. We travel widely and I work part time Jan to April. I hope my experience helps assuage your concerns. We feel blessed to have an active life at 77 for me and 75 for my lovely wife of 51 years. Please private message me if I can help.
Merry Christmas,
Dave L
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13 ReactionsDave that is so sweet of you and I will call you after the holidays you have just made my holiday better! Happy holidays to you and your lovely wife!
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2 ReactionsI just turned 67, and was diagnosed with ET JAK2 a few months ago. Although I’m bummed it does answer questions I’ve had about symptoms like headaches, fatigue, dizzyness and even wierd eye symptoms. I started taking 81 mcg aspirin, but then was also having heart rate issues. So now I’m told I have mild atrial fibrillation and have been put on Eliquis and taken off of the aspirin. I do have to say that it helped some of my symptoms and is supposed to be the gold standard for preventing blood clots. And, finally, yesterday I started HU 100mg. Woke up this morning feeling bone achey and headache. I’m hoping those symptoms get better. I’ve also started seeing a naturopathic oncologist in addition to my MPN specialist. I’ve started taking quercetin and curcumin. I’m considering reveratrol. Has anybody else had similar conditions (cardiac and ET); and/or taking complementary medicines/supplements with good results? Thank you
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3 Reactions