@nohrt4me Thank you for your reply. Taking to my Primary Care Dr. tomorrow. Had my 4 months check up with my Hem/Onc last week. Everything looked good. ET is very complex, maybe we just have to deal with it. Very frustrating.
@ina2022. I'm finding there's a "whose turf is this on?" scenario that goes on between primary doctors and oncologists. I get kicked between the two so I dump all the issues everywhere and hope somebody will address something! It's all happening in the same body! Before PV I had a right bundle branch block with irregular heart rate for several years before it suddenly vanished. We are a complex organism! My 2 cents....
@ina2022. I'm finding there's a "whose turf is this on?" scenario that goes on between primary doctors and oncologists. I get kicked between the two so I dump all the issues everywhere and hope somebody will address something! It's all happening in the same body! Before PV I had a right bundle branch block with irregular heart rate for several years before it suddenly vanished. We are a complex organism! My 2 cents....
@maine Thank you. I will have an echocardiogramin a few days. My primary Care Dr. does not have an answer. Brain Scan was negative, Heart monitor did not show any problems. I do have a low heart rate mostly in the 55 range. So far no other health issues. Both Doctors insist this problem is unrelated to ET.
@birgitr Hi. Glad to hear you have no side affects yet and your platelets have significantly lowered. That's good to know. I will be interested to hear what the MPN specialist has to say. Thanks for keeping me in the loop.
@kat260 I have just gotten the date (8 th of April) of the appointment with this renowned Professor and can’t wait to share his opinion with you and the community, because he always emphasizes that interferon might an preferable option even for older 😅60 years old people because his studies has shown an remarkably change in the high of the mutation. He pronounced that 80 percent at least of the patients has a lower rate of mutation vaf and up to 4o percent a complete remission. And they have shown less incidents in terms of heart attacks or strokes.
@jodyjazz I've noticed most people on this site have started treatment earlier. I'm in Australia and was diagnosed with ET Jak2 in August 2025. Here is what my haematologist advised me. Starting treatment differs by country, Australia is more "conservative", starting around 1000, the US are more "aggressive" starting around 500. It's all about the risk factor and how it's determined, ie. stroke risk increasing from age 60 and then factoring in other contributors like high blood pressure and/or heart issues. I am 60, on medication for high blood pressure and am in the medium risk for heart disease. Both are being managed. I haven't had any previous blood clots. My platelets are at 920. Assuming it's standard everywhere but normal range in Australia is between 150-450. He also said the 100mg aspirin renders half of the platelets "helplesss" so my count is more like 460. I did not have a bone marrow test so not sure if that shows other information to factor in when to start treatment. I have blood tests every 8-12 weeks. I'm really on the cusp of starting treatment and was given the choice to start now or wait to see my blood results later this month.
@kat260
thank you for that, I think the normal range is universal ?. Interesting about the difference in countries and their approach. Figures we would be more aggressive :-0
@jodyjazz my highest was around 750,000. I had a number of symptoms at that level so I went on HU. I was 69. Your count seems on the low side. Did you have symptoms or blood clots?
Seeing these high platelet counts makes me wonder if I was put on HU prematurely--2 years ago. I am 79, diagnosed via bone marrow test, ESJAK2 but my platelets have never been above 500. I wondering what the counts are on this site.
@jodyjazz Starting HU depends on 3 things: Driver mutation, age, and clot history. Some young folks who have never had a clot and are CALR+ are started when platelets are 1,000. Patients over 60 with JAK2 and a clot go might go on HU at 500.
Everybody goes on aspirin, because that's the best preventive for clots. And no clots, no HU, at least for awhile
Patients who cannot take aspirin often take a substitute blood thinner.
I am CALR+. At 64, I was started on 500 mg of HU daily when my platelets started creeping up to 800 pretty fast. I've never had a clot, but if platelets go over 1,000 the docs start worrying about your developing von Willebrand's Syndrome, which can cause bleeding.
How do they look for clots? I am not aware that I have ever had one.
I have a cardiac pacemaker (AV node block at 60) and lung resection due to lung cancer, and it was then in 2022 that the high platelets were discovered, though not that high............515 maybe. Laughably I think of myself as a healthy person 🙂 I do take the usual suspects: cholesterol, BP, and antidepressant medicine. I do not bruise easily, nor bleed freely (for an old person). I am reasonably active and reasonably overweight (7lbs).
@jodyjazz Starting HU depends on 3 things: Driver mutation, age, and clot history. Some young folks who have never had a clot and are CALR+ are started when platelets are 1,000. Patients over 60 with JAK2 and a clot go might go on HU at 500.
Everybody goes on aspirin, because that's the best preventive for clots. And no clots, no HU, at least for awhile
Patients who cannot take aspirin often take a substitute blood thinner.
I am CALR+. At 64, I was started on 500 mg of HU daily when my platelets started creeping up to 800 pretty fast. I've never had a clot, but if platelets go over 1,000 the docs start worrying about your developing von Willebrand's Syndrome, which can cause bleeding.
@nohrt4me Interesting. I have not heard of von Willebrand's Syndrome or in relation to ET. Just googled so will now ask my haematologist more questions given he hasn't mentioned it and I am close to 1000. Thanks for the info!
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@ina2022. I'm finding there's a "whose turf is this on?" scenario that goes on between primary doctors and oncologists. I get kicked between the two so I dump all the issues everywhere and hope somebody will address something! It's all happening in the same body! Before PV I had a right bundle branch block with irregular heart rate for several years before it suddenly vanished. We are a complex organism! My 2 cents....
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4 Reactions@maine Thank you. I will have an echocardiogramin a few days. My primary Care Dr. does not have an answer. Brain Scan was negative, Heart monitor did not show any problems. I do have a low heart rate mostly in the 55 range. So far no other health issues. Both Doctors insist this problem is unrelated to ET.
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1 Reaction@kat260 I have just gotten the date (8 th of April) of the appointment with this renowned Professor and can’t wait to share his opinion with you and the community, because he always emphasizes that interferon might an preferable option even for older 😅60 years old people because his studies has shown an remarkably change in the high of the mutation. He pronounced that 80 percent at least of the patients has a lower rate of mutation vaf and up to 4o percent a complete remission. And they have shown less incidents in terms of heart attacks or strokes.
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2 Reactions@kat260
thank you for that, I think the normal range is universal ?. Interesting about the difference in countries and their approach. Figures we would be more aggressive :-0
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1 Reaction@eloise999
no symptoms what so ever................I cant take aspirin so I don't.
I am anti-social media, but I am sooooo glad I found this forum. It is comforting and confuning.
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2 Reactions@jodyjazz Starting HU depends on 3 things: Driver mutation, age, and clot history. Some young folks who have never had a clot and are CALR+ are started when platelets are 1,000. Patients over 60 with JAK2 and a clot go might go on HU at 500.
Everybody goes on aspirin, because that's the best preventive for clots. And no clots, no HU, at least for awhile
Patients who cannot take aspirin often take a substitute blood thinner.
I am CALR+. At 64, I was started on 500 mg of HU daily when my platelets started creeping up to 800 pretty fast. I've never had a clot, but if platelets go over 1,000 the docs start worrying about your developing von Willebrand's Syndrome, which can cause bleeding.
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2 ReactionsHow do they look for clots? I am not aware that I have ever had one.
I have a cardiac pacemaker (AV node block at 60) and lung resection due to lung cancer, and it was then in 2022 that the high platelets were discovered, though not that high............515 maybe. Laughably I think of myself as a healthy person 🙂 I do take the usual suspects: cholesterol, BP, and antidepressant medicine. I do not bruise easily, nor bleed freely (for an old person). I am reasonably active and reasonably overweight (7lbs).
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1 Reaction@jodyjazz that is great!
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1 Reaction@nohrt4me Interesting. I have not heard of von Willebrand's Syndrome or in relation to ET. Just googled so will now ask my haematologist more questions given he hasn't mentioned it and I am close to 1000. Thanks for the info!
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