I am and I am glad to have found this group. I'm a 59 year old female newly diagnosed with ET and JAK2 positive. I am trying to learn all I can about it. I am also thinking of getting a second opinion.
Have most people had second opinions? UCSF (San Francisco) has a great reputation and has a second opinion division of their medical center.
Hello all,
Glad to have found this group. I am Alisa, a 59 year old female newly diagnosed with ET and JAK2 positive.
My doctor has put me on baby asprin 2x a day and 500mg of Hydroxyurea 1x daily. Had my bone marrow biopsy last week. Waiting for results.
I may have had a stroke at some point, or so my brain scan shows (no history of head injury). I have struggled with migraines for almost 20 years and have had 2 botox for migraine sessions (life changing!). Maybe the ET is the cause of the migraines and the stroke?
466 is the highest my platelets has gone. Often it is in the green zone. I still have so much to learn about all of this.
Glad to have this forum where I can read about others that share my diagnosis!
@1995victoria I have JAK2/PV and take Hydroxyurea and low dose aspirin and I’ve taken 15mg of Mobic/meloxicam for at least 30 years. My hematologist and pharmacist were both aware of that when I was prescribed the HU. I’ve taken it for pain/arthritis in my back, shoulder and hip.
I have always been careful and always take it in the AM after breakfast. I take the HU late at night just before bed as recommended by my hematologist.
@1995victoria Well, that’s a conundrum! I would ask my oncologist to speak with your pain doc. Or, revisit this with pain doc and determine why he/she thinks it’s OK to take Meloxicam. Maybe there’s some research/backup/evidence for the pain doc’s opinion.
There was no discussion in my case. But,if I had been told not to take the Mobic there sure would have been!
@janemc I just looked it up and the Mayo clinic also offers 2nd opinions. I will look into that also. Nice to know we have options.
Here is what it says on their website... "The Mayo Clinic offers second opinions through various methods, including in-person visits, video consultations, phone calls, and virtual visits. Patients can self-refer or have their current doctor submit a referral to get a second opinion on a diagnosis, treatment plan, or for complex conditions.
Hi from Australia. I'm new to the group. I'm very happy to have found this group given the rarity of the condition. It's been interesting to read everyone's stories and information about ET & Jak2. My platelets have been slowly rising since 2021 after my covid shot. Whether that's relevant or not, who knows but it doesn't change the situation. I'm a 60 year old female.
My platelet count was 870 a month ago. My haematologist has said he will start me on HU when I reach 1000. I've been taking Asprin 100mg daily for 3 months now. I also have family history of heart disease so unfortunately was already at risk of blood clots and stroke. Better to at least I know about it, I guess. I think initially my platelets went up and down but the trend over the last 18 months has been steadily on the rise. I don't see him again until end of February so I'm resigned to the fact that I'll be given HU at that time.
Some of the side effects sound scary but I guess everyone is different and I don't know what dose I will be prescribed so I'm trying not to think about it too much and I'll have to wait and see. I have had gut issues my whole life and do and take various things to control it to an extent, so I'm hoping my gut issues won't get any worse once I start HU.
It's comforting to know I'm not the only one dealing with this diagnosis and there is a group I can go to for information and any questions I might have once I start HU. Strangely, I only just found out ET was classed as a blood cancer. My GP and Haematologist didn't mention it so it was a bit of a shock to read it. I think my haematologist is in denial and he said he doesn't necessarily think I'll reach 1000! Given the trend, I think that's very optimistic and given my platelets are pretty high, it will still need addressing.
Anyway, thanks for listening.
Hi from Australia. I'm new to the group. I'm very happy to have found this group given the rarity of the condition. It's been interesting to read everyone's stories and information about ET & Jak2. My platelets have been slowly rising since 2021 after my covid shot. Whether that's relevant or not, who knows but it doesn't change the situation. I'm a 60 year old female.
My platelet count was 870 a month ago. My haematologist has said he will start me on HU when I reach 1000. I've been taking Asprin 100mg daily for 3 months now. I also have family history of heart disease so unfortunately was already at risk of blood clots and stroke. Better to at least I know about it, I guess. I think initially my platelets went up and down but the trend over the last 18 months has been steadily on the rise. I don't see him again until end of February so I'm resigned to the fact that I'll be given HU at that time.
Some of the side effects sound scary but I guess everyone is different and I don't know what dose I will be prescribed so I'm trying not to think about it too much and I'll have to wait and see. I have had gut issues my whole life and do and take various things to control it to an extent, so I'm hoping my gut issues won't get any worse once I start HU.
It's comforting to know I'm not the only one dealing with this diagnosis and there is a group I can go to for information and any questions I might have once I start HU. Strangely, I only just found out ET was classed as a blood cancer. My GP and Haematologist didn't mention it so it was a bit of a shock to read it. I think my haematologist is in denial and he said he doesn't necessarily think I'll reach 1000! Given the trend, I think that's very optimistic and given my platelets are pretty high, it will still need addressing.
Anyway, thanks for listening.
Blood cancers have been happening forever. ET became a named disease more than a hundred years ago. Yet no one understands why these cancers happen.
My theory is, there are so few of us with ET (or any of the other MPNs) that we mystify our doctors. They don't know what we're going through. This makes it easy to dismiss our symptoms and our stress.
But here, you're among friends. Share your concerns, your fears and your frustrations. We've been through it too.
I don't think HU is on anyone's Christmas list. Who wants to take a medication every day, let alone a chemo drug?
I hated taking my first capsule. But, two years in, HU is protecting my heart and shoring up my bone marrow. It works for me, and for decades it's helped hundreds of thousands of people with sickle cell anemia and oral cancers. I hope you find that a bit reassuring.
Hello all,
Glad to have found this group. I am Alisa, a 59 year old female newly diagnosed with ET and JAK2 positive.
My doctor has put me on baby asprin 2x a day and 500mg of Hydroxyurea 1x daily. Had my bone marrow biopsy last week. Waiting for results.
I may have had a stroke at some point, or so my brain scan shows (no history of head injury). I have struggled with migraines for almost 20 years and have had 2 botox for migraine sessions (life changing!). Maybe the ET is the cause of the migraines and the stroke?
466 is the highest my platelets has gone. Often it is in the green zone. I still have so much to learn about all of this.
Glad to have this forum where I can read about others that share my diagnosis!
@alisam I think it is useful to get a second opinion if you feel unsure about the diagnosis. I am ET triple negative and wanted to hear another point of view. I learned the diagnosis can vary on the details, because interpretation of bone marrow morphology is somewhat subjective. Everyone experiences the disease in their own way. A person can have very high platelets and experience few or no symptoms. Others can start to feel symptoms at a lower level. I would say I felt them before my platelets were out of normal range. Try not to worry too much, for most people the disease is manageable with monitoring and care.
I am and I am glad to have found this group. I'm a 59 year old female newly diagnosed with ET and JAK2 positive. I am trying to learn all I can about it. I am also thinking of getting a second opinion.
Have most people had second opinions? UCSF (San Francisco) has a great reputation and has a second opinion division of their medical center.
@alisam
A diagnose of ET is confirmed by a bone marrow test.
Thus, a second opinion seems unnecessary. Plus UCSF is considered an excellent facility.
Do what you need to do to feel comfortable. I did not have a second opinion. My bone marrow test confirmed what Had already been diagnosed.
Blood cancers have been happening forever. ET became a named disease more than a hundred years ago. Yet no one understands why these cancers happen.
My theory is, there are so few of us with ET (or any of the other MPNs) that we mystify our doctors. They don't know what we're going through. This makes it easy to dismiss our symptoms and our stress.
But here, you're among friends. Share your concerns, your fears and your frustrations. We've been through it too.
I don't think HU is on anyone's Christmas list. Who wants to take a medication every day, let alone a chemo drug?
I hated taking my first capsule. But, two years in, HU is protecting my heart and shoring up my bone marrow. It works for me, and for decades it's helped hundreds of thousands of people with sickle cell anemia and oral cancers. I hope you find that a bit reassuring.
@janemc Thanks for your reply and reassurance. It's good to know the drug works and that there are actually treatments available. There are definitely worse things in life and worse cancers so I remind myself of that.
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@alisam
So sorry for your diagnosis, alisam. But -- welcome!
Living in a remote part of Virginia, with few medical resources, I haven't sought a second opinion.
It's essential to understand what's going on, though, so you can make the best treatment decisions. A good care team makes all the difference.
Hope someone from CA will chime in about UCSF.
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1 ReactionHow awful that you've struggled with migraines for 20 years.
Lots of us with ET do have headaches. Mine can be head-splitting. As it's brought down my platelet count, HU has really helped with that.
Migraines are to headaches as mountains are to molehills, though. To me it makes sense that thickened blood could be a contributor.
And our platelet-heavy blood does make us more vulnerable to strokes and blood clots.
To have varying platelet counts is quite normal. Don't worry about any particular number.
Every aspirin, every HU capsule you take is helping you, alisam.
Wonder if you saw the recent New York Times article on migraines? Not sure if this link will work . . .
https://www.nytimes.com/2025/10/29/opinion/headache-migraine-science-research.html
@christina3444 my pain dr rx meloxicam but my hemo/oncologist said no, so I don't know
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1 Reaction@1995victoria Well, that’s a conundrum! I would ask my oncologist to speak with your pain doc. Or, revisit this with pain doc and determine why he/she thinks it’s OK to take Meloxicam. Maybe there’s some research/backup/evidence for the pain doc’s opinion.
There was no discussion in my case. But,if I had been told not to take the Mobic there sure would have been!
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Hug
2 Reactions@janemc I just looked it up and the Mayo clinic also offers 2nd opinions. I will look into that also. Nice to know we have options.
Here is what it says on their website... "The Mayo Clinic offers second opinions through various methods, including in-person visits, video consultations, phone calls, and virtual visits. Patients can self-refer or have their current doctor submit a referral to get a second opinion on a diagnosis, treatment plan, or for complex conditions.
-
Like -
Helpful -
Hug
3 ReactionsHi from Australia. I'm new to the group. I'm very happy to have found this group given the rarity of the condition. It's been interesting to read everyone's stories and information about ET & Jak2. My platelets have been slowly rising since 2021 after my covid shot. Whether that's relevant or not, who knows but it doesn't change the situation. I'm a 60 year old female.
My platelet count was 870 a month ago. My haematologist has said he will start me on HU when I reach 1000. I've been taking Asprin 100mg daily for 3 months now. I also have family history of heart disease so unfortunately was already at risk of blood clots and stroke. Better to at least I know about it, I guess. I think initially my platelets went up and down but the trend over the last 18 months has been steadily on the rise. I don't see him again until end of February so I'm resigned to the fact that I'll be given HU at that time.
Some of the side effects sound scary but I guess everyone is different and I don't know what dose I will be prescribed so I'm trying not to think about it too much and I'll have to wait and see. I have had gut issues my whole life and do and take various things to control it to an extent, so I'm hoping my gut issues won't get any worse once I start HU.
It's comforting to know I'm not the only one dealing with this diagnosis and there is a group I can go to for information and any questions I might have once I start HU. Strangely, I only just found out ET was classed as a blood cancer. My GP and Haematologist didn't mention it so it was a bit of a shock to read it. I think my haematologist is in denial and he said he doesn't necessarily think I'll reach 1000! Given the trend, I think that's very optimistic and given my platelets are pretty high, it will still need addressing.
Anyway, thanks for listening.
-
Like -
Helpful -
Hug
2 Reactions@kat260
Blood cancers have been happening forever. ET became a named disease more than a hundred years ago. Yet no one understands why these cancers happen.
My theory is, there are so few of us with ET (or any of the other MPNs) that we mystify our doctors. They don't know what we're going through. This makes it easy to dismiss our symptoms and our stress.
But here, you're among friends. Share your concerns, your fears and your frustrations. We've been through it too.
I don't think HU is on anyone's Christmas list. Who wants to take a medication every day, let alone a chemo drug?
I hated taking my first capsule. But, two years in, HU is protecting my heart and shoring up my bone marrow. It works for me, and for decades it's helped hundreds of thousands of people with sickle cell anemia and oral cancers. I hope you find that a bit reassuring.
-
Like -
Helpful -
Hug
3 Reactions@alisam I think it is useful to get a second opinion if you feel unsure about the diagnosis. I am ET triple negative and wanted to hear another point of view. I learned the diagnosis can vary on the details, because interpretation of bone marrow morphology is somewhat subjective. Everyone experiences the disease in their own way. A person can have very high platelets and experience few or no symptoms. Others can start to feel symptoms at a lower level. I would say I felt them before my platelets were out of normal range. Try not to worry too much, for most people the disease is manageable with monitoring and care.
-
Like -
Helpful -
Hug
4 Reactions@alisam
A diagnose of ET is confirmed by a bone marrow test.
Thus, a second opinion seems unnecessary. Plus UCSF is considered an excellent facility.
Do what you need to do to feel comfortable. I did not have a second opinion. My bone marrow test confirmed what Had already been diagnosed.
-
Like -
Helpful -
Hug
2 Reactions@janemc Thanks for your reply and reassurance. It's good to know the drug works and that there are actually treatments available. There are definitely worse things in life and worse cancers so I remind myself of that.
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Like -
Helpful -
Hug
1 Reaction