Hi, I am new to this group. I just found it. I have been diagnosed ET/ JAK2 last spring 2025. My platelets have been gradually going up since summer 2021, but not too much attention has been given to it. I am on Plavix instead of aspirin and I just started HU 500mg and in the latest test my platelets were 730. I have not had a bone marrow biopsy yet. My new hematologist brought it up. Is it a standard thing to have to have that biopsy? She also talked about Myelofibrosis, scarring in the bone marrow, enlarged spleen and the ultrasound of the spleen. Are all of these things inevitable?
I have been feeling OK. So it is difficult to digest that so much is wrong with me.
- Hipsu5
@hipsu5, I am also a member of the myeloproliferative neoplasm (MPN) club. My condition is called Polycythemia vera (PV). PV is an ugly sister of your ET and in the MPN family. In May of 2018 I was diagnosed with PV after a routine blood test with platelets in the 685,000 range. Fast forward to 2026. I take one 500 Hydroxyurea (HU) every morning. I call this "Chemo in a pill." I have little or no symptoms. I am determined not to let this condition rule my life. I thought my diagnose was the end, it turned out to be a new beginning for me. I go to my gym 3 times a week, I stay active with my veteran's organizations and am on my American Legion Honor Guard detail. I am a volunteer for Hosparus where I visit veterans on hospice. I have fatigue every evening. Is that from PV or just being an old timer? Who knows? Today is my 67th birthday. Everyday is a new adventure. Long live the fighters!
@hipsu5, I am also a member of the myeloproliferative neoplasm (MPN) club. My condition is called Polycythemia vera (PV). PV is an ugly sister of your ET and in the MPN family. In May of 2018 I was diagnosed with PV after a routine blood test with platelets in the 685,000 range. Fast forward to 2026. I take one 500 Hydroxyurea (HU) every morning. I call this "Chemo in a pill." I have little or no symptoms. I am determined not to let this condition rule my life. I thought my diagnose was the end, it turned out to be a new beginning for me. I go to my gym 3 times a week, I stay active with my veteran's organizations and am on my American Legion Honor Guard detail. I am a volunteer for Hosparus where I visit veterans on hospice. I have fatigue every evening. Is that from PV or just being an old timer? Who knows? Today is my 67th birthday. Everyday is a new adventure. Long live the fighters!
Hi, I am new to this group. I just found it. I have been diagnosed ET/ JAK2 last spring 2025. My platelets have been gradually going up since summer 2021, but not too much attention has been given to it. I am on Plavix instead of aspirin and I just started HU 500mg and in the latest test my platelets were 730. I have not had a bone marrow biopsy yet. My new hematologist brought it up. Is it a standard thing to have to have that biopsy? She also talked about Myelofibrosis, scarring in the bone marrow, enlarged spleen and the ultrasound of the spleen. Are all of these things inevitable?
I have been feeling OK. So it is difficult to digest that so much is wrong with me.
- Hipsu5
@hipsu5 Before you decide on they biopsy please ask lots of questions. My local hospital only does the old type of biopsy one that has the the needle inserted in the back and done by manually turning it by hand to get the sample. My doctor sent me out of town to another doctor that uses a drill. They put me on my stomach and put me to sleep. Did the procedure and I never felt a thing and the best thing was no pain at all. So this way is no big deal I was in and out of the hospital in 4 to 5 hours.
Also I had a case of AFIB so my heart doctor put me on eliquis now I take Hydra 500 mg daily and eliquisis . The Hydra is not expensive but the eliquis is . Hydrea is chemo have random things happen but they usually go away. Then something else shows up but soon leaves. Good luck
@colleenyoung
I have now a date for my BMB. It is scheduled on February 9th and then my follow up with the doctor is March 9.
I had a blood test on Monday Jan. 12. There wasn't too much change yet.
Oct. 9: platelets 705, RDW 15.0
Dec. 4: platelets 776, RDW-CV 14.9 ----> started HU on Dec. 7
Dec. 18: platelets 730, RDW 15.3
Jan. 12: platelets 633, RDW-CV 16.2
My next blood draw is Jan. 26, 2026.
I posted today also in Diabetes & Endocrine System Support Group, because a CT scan Jan. 2025 revealed that I have some nodules in my thyroid. I finally got an ultrasound and biopsy in December. The biopsy result was 'Nondiagnostic'.
- Hipsu 🙂
I am (living with ET, JAK2 mutation) since April 2025, but I just took my first dose of hydroxyurea this morning, 500 mg/day. I took it with food and so far can't tell I took it. I've only had the one dose so far, though!
I really did not want to have to take a chemo pill but I don't want a stroke or heart attack, so I'm taking it.
My story:
I was diagnosed last year after my platelet count had been steadily increasing and the typical causes had been ruled out. My PCP had the JAK2 mutation test done and it was positive, so he referred me to a hem/oncologist. Count was in the low 500s by then, iirc. The oncologist explained that the causes of this gene mutation are unknown, they can't cure ET, but it can be managed. He said it is technically a form of blood cancer but he prefers to call it a blood disorder, and I do too. This is not a cancer that spreads to other parts of the body, although rarely it can turn into a form of leukemia, but that isn't common. He said the big danger in ET is blood clots which can cause a stroke, heart attack, etc., especially in older people. He put me on a low-dose daily aspirin to make the platelets less sticky. He told me if my platelet count got over 600,000 he would put me on a chemo pill.
Two days ago at my checkup my count had risen to about 614 so he prescribed the 500 mg daily dose. I asked if I could start at a low dose and he said this IS a low dose. My red and white blood cell counts have been normal, btw. He said HU can also reduce those, so dosing may be a balancing act. He said to come back for a checkup and blood draw in 4 weeks, although they made my appointment for 5 weeks. (Should I call and change it??)
He said most people have no detectable side effects from the HU, especially at the dosages commonly given for ET.
Neither doctor mentioned having a bone marrow biopsy done or any further tests. Apparently ruling out other causes (infection, vitamin and iron deficiencies, etc.) and the JAK2 positive test results were confirmation enough for them. I was also age 77 (almost 78) when I was diagnosed, so that may be a factor too.
I have had no symptoms from my ET. I tire more easily than I once did, but that is probably just age related. I can do what I need to do, take long walks, etc. I hope I will have no detectable side effects from the HU, and that my red and white blood cell counts can remain satisfactory. (Not looking forward to tomorrow's dose but will take it!)
This was an unexpected and unwelcome diagnosis, but of course it could be much much worse. I'm trying to remain positive. My oncologist has a positive attitude, too. Apparently many people live with ET for decades and lead normal lives. Prayers and best wishes for a good outcome for you, lindamarie, and for everyone here.
@hipsu5 Before you decide on they biopsy please ask lots of questions. My local hospital only does the old type of biopsy one that has the the needle inserted in the back and done by manually turning it by hand to get the sample. My doctor sent me out of town to another doctor that uses a drill. They put me on my stomach and put me to sleep. Did the procedure and I never felt a thing and the best thing was no pain at all. So this way is no big deal I was in and out of the hospital in 4 to 5 hours.
@vickieannb57
Thanks for your comment. How much pain there is after the BMB? Does it take a long time to recover? I had the FNB for my thyroid nodule. It wasn't too painful a procedure with lidocaine, just unpleasant. It left just little unnoticeable needle marks, but I had some pain on that side of my neck and head all the way to the ear for quite some time.
- Hipsu
I had no pain at all I live in Virginia they sent me to Roanoke because our local hospital had the old way of doing the biopsy so they send everyone to Roanoke. They were very clear about what they were doing and explained everything. I was put on my stomach in a CT scanner this was to pin point the location they wanted. After the table went in and out a couple of times I went to sleep and didn't know anything until they woke me up after I was on my back ready to go to my room. They kept me a couple of hours and did frequent checks to make sure there was no bleeding then sent me home. I live a hour away but I never had any pain at all. They mark your back where they want to do the procedure so my mark just above my butt center in the middle of my back. Please don't worry all the waiting before and the 2 to 3 weeks waiting on results was a lot harder than the procedure. Sorry this is so long wanted to give you a clear picture. Just be sure that you are put to sleep or sedated. It is know big deal Good Luck
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@hipsu5, I am also a member of the myeloproliferative neoplasm (MPN) club. My condition is called Polycythemia vera (PV). PV is an ugly sister of your ET and in the MPN family. In May of 2018 I was diagnosed with PV after a routine blood test with platelets in the 685,000 range. Fast forward to 2026. I take one 500 Hydroxyurea (HU) every morning. I call this "Chemo in a pill." I have little or no symptoms. I am determined not to let this condition rule my life. I thought my diagnose was the end, it turned out to be a new beginning for me. I go to my gym 3 times a week, I stay active with my veteran's organizations and am on my American Legion Honor Guard detail. I am a volunteer for Hosparus where I visit veterans on hospice. I have fatigue every evening. Is that from PV or just being an old timer? Who knows? Today is my 67th birthday. Everyday is a new adventure. Long live the fighters!
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8 Reactions@bluegrasspv2018
I'm in awe. RESPECT.
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1 Reaction@hipsu5 Before you decide on they biopsy please ask lots of questions. My local hospital only does the old type of biopsy one that has the the needle inserted in the back and done by manually turning it by hand to get the sample. My doctor sent me out of town to another doctor that uses a drill. They put me on my stomach and put me to sleep. Did the procedure and I never felt a thing and the best thing was no pain at all. So this way is no big deal I was in and out of the hospital in 4 to 5 hours.
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Helpful -
Hug
2 ReactionsAlso I had a case of AFIB so my heart doctor put me on eliquis now I take Hydra 500 mg daily and eliquisis . The Hydra is not expensive but the eliquis is . Hydrea is chemo have random things happen but they usually go away. Then something else shows up but soon leaves. Good luck
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1 Reaction@hipsu5
Good times… I have ET, Jak 2 positive… Life is good
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3 ReactionsI am (living with ET, JAK2 mutation) since April 2025, but I just took my first dose of hydroxyurea this morning, 500 mg/day. I took it with food and so far can't tell I took it. I've only had the one dose so far, though!
I really did not want to have to take a chemo pill but I don't want a stroke or heart attack, so I'm taking it.
My story:
I was diagnosed last year after my platelet count had been steadily increasing and the typical causes had been ruled out. My PCP had the JAK2 mutation test done and it was positive, so he referred me to a hem/oncologist. Count was in the low 500s by then, iirc. The oncologist explained that the causes of this gene mutation are unknown, they can't cure ET, but it can be managed. He said it is technically a form of blood cancer but he prefers to call it a blood disorder, and I do too. This is not a cancer that spreads to other parts of the body, although rarely it can turn into a form of leukemia, but that isn't common. He said the big danger in ET is blood clots which can cause a stroke, heart attack, etc., especially in older people. He put me on a low-dose daily aspirin to make the platelets less sticky. He told me if my platelet count got over 600,000 he would put me on a chemo pill.
Two days ago at my checkup my count had risen to about 614 so he prescribed the 500 mg daily dose. I asked if I could start at a low dose and he said this IS a low dose. My red and white blood cell counts have been normal, btw. He said HU can also reduce those, so dosing may be a balancing act. He said to come back for a checkup and blood draw in 4 weeks, although they made my appointment for 5 weeks. (Should I call and change it??)
He said most people have no detectable side effects from the HU, especially at the dosages commonly given for ET.
Neither doctor mentioned having a bone marrow biopsy done or any further tests. Apparently ruling out other causes (infection, vitamin and iron deficiencies, etc.) and the JAK2 positive test results were confirmation enough for them. I was also age 77 (almost 78) when I was diagnosed, so that may be a factor too.
I have had no symptoms from my ET. I tire more easily than I once did, but that is probably just age related. I can do what I need to do, take long walks, etc. I hope I will have no detectable side effects from the HU, and that my red and white blood cell counts can remain satisfactory. (Not looking forward to tomorrow's dose but will take it!)
This was an unexpected and unwelcome diagnosis, but of course it could be much much worse. I'm trying to remain positive. My oncologist has a positive attitude, too. Apparently many people live with ET for decades and lead normal lives. Prayers and best wishes for a good outcome for you, lindamarie, and for everyone here.
-
Like -
Helpful -
Hug
5 Reactions@vickieannb57
Thanks for your comment. How much pain there is after the BMB? Does it take a long time to recover? I had the FNB for my thyroid nodule. It wasn't too painful a procedure with lidocaine, just unpleasant. It left just little unnoticeable needle marks, but I had some pain on that side of my neck and head all the way to the ear for quite some time.
- Hipsu
I had no pain at all I live in Virginia they sent me to Roanoke because our local hospital had the old way of doing the biopsy so they send everyone to Roanoke. They were very clear about what they were doing and explained everything. I was put on my stomach in a CT scanner this was to pin point the location they wanted. After the table went in and out a couple of times I went to sleep and didn't know anything until they woke me up after I was on my back ready to go to my room. They kept me a couple of hours and did frequent checks to make sure there was no bleeding then sent me home. I live a hour away but I never had any pain at all. They mark your back where they want to do the procedure so my mark just above my butt center in the middle of my back. Please don't worry all the waiting before and the 2 to 3 weeks waiting on results was a lot harder than the procedure. Sorry this is so long wanted to give you a clear picture. Just be sure that you are put to sleep or sedated. It is know big deal Good Luck