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!
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 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 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 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 😑 .
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've said it before, sure taking HU as chemo was scary, but having a stroke or heart attack is scarier in my opinion. I also take a baby aspirin to make platelets less sticky. So far, so good.
I thought so too at first, but my platelets have been climbing before 2021. It's genetic, or age. I popped my first pill today, with shaky hand. Believe me, this is hard to process.
Hi @debi342 Just checking in with you to see how things went yesterday with your first day of taking HU. I know the trepidation of taking a new med…flight or fight!
Now that the ominous first one is out of the way, hopefully you’ll feel a little more certain about the medication and the positive change it can make in your platelet level.
Do you feel you had any reaction to the HU such as being tired?
The headaches would subside immediately with no aftereffects so I knew it wasn't anything more than the HU. Prior to starting this medication, I was getting serious migraine headaches every two months like clockwork. I'd had migraines occasionally but they had pretty much stopped once I hit menopause 16 years ago. I was concerned about taking HU since it is a chemotherapy drug, but my platelets are in the 190s now (down from 792) and I am having no side effects. We all react differently and all medication has side effects that some of us will have and some of us won't. To me, the risk of side effects was preferred to the high risk of dying from a heart attack or stroke due to ET.
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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!
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4 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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Hug
7 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 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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Hug
6 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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13 ReactionsSo sorry. Hope you feel better soon.
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3 ReactionsI 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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Helpful -
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10 ReactionsI've said it before, sure taking HU as chemo was scary, but having a stroke or heart attack is scarier in my opinion. I also take a baby aspirin to make platelets less sticky. So far, so good.
-
Like -
Helpful -
Hug
3 ReactionsHi @debi342 Just checking in with you to see how things went yesterday with your first day of taking HU. I know the trepidation of taking a new med…flight or fight!
Now that the ominous first one is out of the way, hopefully you’ll feel a little more certain about the medication and the positive change it can make in your platelet level.
Do you feel you had any reaction to the HU such as being tired?
-
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Helpful -
Hug
3 ReactionsThe headaches would subside immediately with no aftereffects so I knew it wasn't anything more than the HU. Prior to starting this medication, I was getting serious migraine headaches every two months like clockwork. I'd had migraines occasionally but they had pretty much stopped once I hit menopause 16 years ago. I was concerned about taking HU since it is a chemotherapy drug, but my platelets are in the 190s now (down from 792) and I am having no side effects. We all react differently and all medication has side effects that some of us will have and some of us won't. To me, the risk of side effects was preferred to the high risk of dying from a heart attack or stroke due to ET.
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Hug
7 Reactions