Anyone living with Essential Thrombocythemia with JAK2?

One more thing, as if the above wasn't far more than enough LOL, is that I think it's important to find a doctor that we trust. If we don't trust our doctor we should look for a more qualified one that we will trust, because we can read about our condition all day long but that doesn't make us an MD. Every patient's body is different and doctors have to look at the whole picture, and they know far more about reading test results and how they interact than we do. We don't have ET in a vacuum. A second opinion is always an option and maybe even recommended, but as someone already mentioned, it needs to be a well-qualified second opinion.

I know that I'm one who is naturally skeptical about things sometimes, and I tend to check behind people who do tasks, but I've got to remind myself that google doesn't make me an MD. If I wind up with strong reservations about the progress of my ET, I'll have to seek another doctor, but until then I think I must trust my specialist for his expertise. Of course we should ask a lot of questions and make our concerns known, and not let them be blown off. (Not all doctors are equal for sure.) So far he seems very caring and knowledgeable, but then all I've had to do so far is take low-dose aspirin. We'll see how it goes.

I'll finally hush now! Again many thanks for all who contribute to these discussions. They are a gold mine for us.

I've had ET w/JAK2 since 4/21/21. I've taken HU ever since. I had pallets as high as 1175 to as low as 400. I take HU 2x daily. I have had all the side effects at one time or another. Few that come and go are headaches, mouth sores, swelling of legs, nails thinning, hair thinning, tired, brain fog, dry mouth and a few others, but I've been able to handle it knowing that other people have it worse. My doctor told me that the platelet levels can go up and down even with just a stubbed toe. I really can't say enough about how important hydration!!!!!! is. I learned it the hard way. Important to listen to your body, when you're tired REST, when you have the energy GET 'EA DONE.
I realize I'll be on this journey the rest of my life and I'm going to make every moment count. Live in the moment.
Be as active as you can and don't forget to stretch.

Hi all,
I'm following several of these ET threads and find them all very helpful and reassuring! A big thank-you to all who contribute. Janemc, your advice seems to always be especially calming and comforting as well as very helpful.

As I've posted in a few other threads, I was diagnosed with JAK2 ET in April at age 77 with a platelet count of 581k, which had been steadily increasing over the past couple of years. My PCP had done tests to rule out other causes such as iron, D, inflammation, thyroid, etc. Referred to O/H specialist who told me to take a low-dose coated 81 mg aspirin a day to make the platelets more slippery and less likely to cause clots which could cause a stroke, heart attack, or pulmonary embolism. This seems to be the standard initial advice for many of us who don't have any contraindications for aspirin if we are at an age (over 65?) that puts us at high risk for clots. He did not mention a BMB and I didn't ask for one. Both he and my PCP agree on the diagnosis of JAK2 ET and I'm trusting them.

He said my age and family history put me at high risk and if my count gets above 600k I would need to go on a chemo pill (presumably HU although he didn't specify). I'll share some other things he told me in hopes it might be of use to someone else:

He said I was not born with ET nor the JAK2 gene mutation and they don't know what causes them nor how to prevent them. He said it was nothing I had done and it is not hereditary (a relief, as I have three adult children). It is something some people develop over time and is rare. He said there is no cure for ET at present but it can be managed well. (Through my reading about it life spans don't seem to be affected if it is treated.)

He said although it is classified as a blood cancer, he prefers to call it a blood disorder, so that's what I'm calling it too in my mind. (I had learned from my own reading that this is not a cancer that spreads to other parts of our bodies, thankfully.) He said it can sometimes turn into a different blood marrow disorder or a form of leukemia over time, but that is not common and isn't likely to happen. Should it ever happen, we'll address that at the time.

He said to not worry that the treatment is a "chemo" pill, that for most people it is tolerated well and doesn't cause you to throw up or your hair to all come out. That was reassuring.

Btw, the first time I was told the word "cancer" was when I received a welcoming email from the medical practice of the specialist, from a "cancer institute." That was a shock but I did a lot of reading about ET. I think that's how I found these discussions. I agree no one should learn they have any form of cancer from an email or an online discussion forum, but I haven't let that bother me.

My platelet count has since actually gone down to the 540s at O/H visit, then up to 560s last PCP checkup, but still under 600k. That's the first time it's ever gone down. I have to go back to my O/H in January for a checkup. In the meantime I will have cataract surgery. I did not want to be on a new chemo drug and then have eye surgery while my body was adjusting to the chemo pill, so I'm so very thankful I won't be. I also have to get my second shingles vaccine.

Sorry this is so wordy!

One thing I really wanted to say is that is is obviously difficult to know WHAT exactly is causing symptoms for those of us with ET. I don't have any severe symptoms, but after reading these posts, I do have some mild ones, but from what?? Maybe not ET and certainly not HU, as I've never been on that yet. Maybe they aren't really symptoms of anything but age?

For example (and I hope this might be comforting to some), I tire more easily than I once did although I have far less to do, being retired. But I'm 78, so I blame that on being age-related. Also, my hair has thinned just a little on top and I have to clean out my hairbrush much more often, but again I figure that's age. My fingernails have some small vertical ridges and have had for some time. I've had problems sleeping through the night for several years although nothing is on my mind. Other than some constipation I don't have GI issues, though, and I've never had a headache or any bone pain.

I said all that to say, even before I was diagnosed with ET and my count got above normal, I was having these mild "symptoms." I've not yet seen much less taken a HU capsule, so they can't be from that either. All I can surmise is that they are just age related or "just life."

My point is that I really, really don't want to have to go on HU, but these "symptoms" I already have aren't from the drug. I don't even take any over the counter meds. However, I've convinced myself I will have to try HU if my platelets get too high, because the alternative would be very high risk for a stroke or heart attack. I'm going to have to remember that I had some mild "symptoms" before any of these new things happened. Therefore, I would urge those who are (like me) very hesitant to take their HU to not jump to conclusions about side effects unless they are severe. I'm going to have to re-read my own post if/when my doctor has to prescribe it for me. I don't want to have to take it. But I also don't want a stroke!

Sorry for my rambling, but reading about all these symptoms made me realize I have some of them in a mild form, and had them before ET and still without any HU. Everyone has to make up his or her own mind, but ET doesn't need to be left untreated because of the risk of fatal blood clots.

God bless all of you and prayers for good health.

Again, sorry so wordy and rambling! I'm a fast typist on a laptop and that can be a bad thing on forums, LOL.

@cec2

You've conveyed so much useful information! That's especially helpful because most of us had ever even heard of ET prior to our diagnosis.

I have just one comment to add to your excellent posts. Fatigue is the most commonly reported symptom of ET, because our bodies burn lots of energy over-producing platelets. When you say "I tired more easily," this may be why.

If you do reach a point where your oncologist suggests HU, you may start feeling stronger as that over-production is suppressed.

That's been my experience, and why I now consider HU, the scary chemo drug, my friend.

@cec2 Not wordy for me. I understand rambling. I can relate to hair, nails, and tired. I can add to the list so many things but keep wondering if it isn't age or other issues. I know I throw ET and HU under the bus a lot lately. BUT we must keep our thoughts positive...I even think sometimes "I have to fake it until I make it". So just ramble you have the audience.

Hi all,
I'm following several of these ET threads and find them all very helpful and reassuring! A big thank-you to all who contribute. Janemc, your advice seems to always be especially calming and comforting as well as very helpful.

As I've posted in a few other threads, I was diagnosed with JAK2 ET in April at age 77 with a platelet count of 581k, which had been steadily increasing over the past couple of years. My PCP had done tests to rule out other causes such as iron, D, inflammation, thyroid, etc. Referred to O/H specialist who told me to take a low-dose coated 81 mg aspirin a day to make the platelets more slippery and less likely to cause clots which could cause a stroke, heart attack, or pulmonary embolism. This seems to be the standard initial advice for many of us who don't have any contraindications for aspirin if we are at an age (over 65?) that puts us at high risk for clots. He did not mention a BMB and I didn't ask for one. Both he and my PCP agree on the diagnosis of JAK2 ET and I'm trusting them.

He said my age and family history put me at high risk and if my count gets above 600k I would need to go on a chemo pill (presumably HU although he didn't specify). I'll share some other things he told me in hopes it might be of use to someone else:

He said I was not born with ET nor the JAK2 gene mutation and they don't know what causes them nor how to prevent them. He said it was nothing I had done and it is not hereditary (a relief, as I have three adult children). It is something some people develop over time and is rare. He said there is no cure for ET at present but it can be managed well. (Through my reading about it life spans don't seem to be affected if it is treated.)

He said although it is classified as a blood cancer, he prefers to call it a blood disorder, so that's what I'm calling it too in my mind. (I had learned from my own reading that this is not a cancer that spreads to other parts of our bodies, thankfully.) He said it can sometimes turn into a different blood marrow disorder or a form of leukemia over time, but that is not common and isn't likely to happen. Should it ever happen, we'll address that at the time.

He said to not worry that the treatment is a "chemo" pill, that for most people it is tolerated well and doesn't cause you to throw up or your hair to all come out. That was reassuring.

Btw, the first time I was told the word "cancer" was when I received a welcoming email from the medical practice of the specialist, from a "cancer institute." That was a shock but I did a lot of reading about ET. I think that's how I found these discussions. I agree no one should learn they have any form of cancer from an email or an online discussion forum, but I haven't let that bother me.

My platelet count has since actually gone down to the 540s at O/H visit, then up to 560s last PCP checkup, but still under 600k. That's the first time it's ever gone down. I have to go back to my O/H in January for a checkup. In the meantime I will have cataract surgery. I did not want to be on a new chemo drug and then have eye surgery while my body was adjusting to the chemo pill, so I'm so very thankful I won't be. I also have to get my second shingles vaccine.

Sorry this is so wordy!

One thing I really wanted to say is that is is obviously difficult to know WHAT exactly is causing symptoms for those of us with ET. I don't have any severe symptoms, but after reading these posts, I do have some mild ones, but from what?? Maybe not ET and certainly not HU, as I've never been on that yet. Maybe they aren't really symptoms of anything but age?

For example (and I hope this might be comforting to some), I tire more easily than I once did although I have far less to do, being retired. But I'm 78, so I blame that on being age-related. Also, my hair has thinned just a little on top and I have to clean out my hairbrush much more often, but again I figure that's age. My fingernails have some small vertical ridges and have had for some time. I've had problems sleeping through the night for several years although nothing is on my mind. Other than some constipation I don't have GI issues, though, and I've never had a headache or any bone pain.

I said all that to say, even before I was diagnosed with ET and my count got above normal, I was having these mild "symptoms." I've not yet seen much less taken a HU capsule, so they can't be from that either. All I can surmise is that they are just age related or "just life."

My point is that I really, really don't want to have to go on HU, but these "symptoms" I already have aren't from the drug. I don't even take any over the counter meds. However, I've convinced myself I will have to try HU if my platelets get too high, because the alternative would be very high risk for a stroke or heart attack. I'm going to have to remember that I had some mild "symptoms" before any of these new things happened. Therefore, I would urge those who are (like me) very hesitant to take their HU to not jump to conclusions about side effects unless they are severe. I'm going to have to re-read my own post if/when my doctor has to prescribe it for me. I don't want to have to take it. But I also don't want a stroke!

Sorry for my rambling, but reading about all these symptoms made me realize I have some of them in a mild form, and had them before ET and still without any HU. Everyone has to make up his or her own mind, but ET doesn't need to be left untreated because of the risk of fatal blood clots.

God bless all of you and prayers for good health.

Again, sorry so wordy and rambling! I'm a fast typist on a laptop and that can be a bad thing on forums, LOL.

@msmac3
Thank you for your patience with me and your kind words!

I guess that was the point I was trying to make. Some of the symptoms of ET and/or HU can have other causes, so maybe if they are not severe we shouldn't be too quick to blame our meds, or stress too much over having to take them or having ET. (Talking to myself too here.) The cause might be age or something else, because people without ET have those symptoms too sometimes.

I forgot to mention that I have dry eyes, but I know that's not from my ET because I've had that problem for several years, while my platelet count was normal. I think I've also had nail ridges before I developed ET. And some of my friends are almost bald on top, so the minor hair loss I have may be natural. It can be hard to know what to blame unless the timing matches and makes it obvious.

I'm not saying these things to belittle symptoms at all, because although mine aren't (yet?), some are severe and are due to ET and/or HU. I guess I'm trying more to be positive and perhaps be a calming influence when we get anxious over this unexpected disorder/disease and meds for it. Some things might have happened even without ET.
(I think mine may be related more to age than to my ET because they seem to pre-date my ET.)

A question:
Does anyone know if taking the Shingrex shingles shots affect platelet counts either way? I've got to take my second one in the next couple of months. I'll try to remember to mention it at my next appointment of course.
Again, many thanks.

@cec2
Your story seems remarkably like mine. I was diagnosed in 2022 , Jak2, at age 69. My blood counts have always, since the start of this, been in the 400’s and now creeping to the 500’s. But they do go up and down quite a bit.

I’m dreading the day my platelets go above the 600 mark, and because of my age (almost 73), will be advised to go on the HU.

As far as symptoms, I’ve had what I believe are hypnic headaches (headaches that wake you up in the middle of the night) for probably close to 20 years now, so I don’t think they’re related to the ET diagnosis. Also, I am quite fatigued throughout the day, but it really hits around 3 in the afternoon. When I told my hematologist this, she said it was likely my age, and not the ET. Also, I feel like my vision is much worse lately..again, probably my age.. (?)

So I’m just living my life, taking 2 low-dose aspirin a day, and trying not to think of those blood draws until a few days before I know I have to have one.

Best of luck to you.

@cec2 I had my regular blood draw a week after second shingrex shot, and my platelets plummeted. Dr wanted to do more blood draws to make sure everything was ok. Seems shingles shot dropped my platelets, but slowly recovered over 2 months.