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
With ET you may experience few symptoms or lots of them. It is very individual I recommend bone marrow biopsy with NGS analysis then you will have a better idea of the condition of your bone marrow biopsy. Most ET patients do not see progression to MF or AMl, but some do and that is something to monitor. There is a lot of educational material out there about that. Best wishes.
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
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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
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Helpful -
Hug
1 ReactionWith ET you may experience few symptoms or lots of them. It is very individual I recommend bone marrow biopsy with NGS analysis then you will have a better idea of the condition of your bone marrow biopsy. Most ET patients do not see progression to MF or AMl, but some do and that is something to monitor. There is a lot of educational material out there about that. Best wishes.
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Hug
4 Reactions@hipsu5
A diagnosis of ET lands like a ton of bricks.
Scary things are NOT inevitable!
By taking Plavix and HU, you're off to a great start.
So sorry you have ET, but so glad you've found this forum!
Ask a million questions. Someone here will have experience to share.
You are not alone!
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