Hi jello13577,
I really like your approach. I have CALR and not JAK2, but I do have high platelets. I learned this about three months ago at a routine doctor appointment with fill in primary doctors running labs. I got sent to O/H for the first time and she wanted me to take no baby aspirin but just Hydrea 500 mg twice each day which I did not. When she cleared me to take baby aspirin, I did and have been as I have no problem taking baby aspirin. I am 65 with only issue of two painless enlarged joints, no comorbidities so no meds, feel just fine, have lots of energy daily, exercise at least one hour per day walking, biking, doing light weight workouts, stretching, etc. , sleep well at night, and cook and eat healthy food. I do take daily multiple vitamin, and calcium, vit D. Doctors seem to not like vitamins, but to get full daily requirements by eating foods alone it is difficult as I have done nutrition analysis checking. Yes, vitamin K, A, D, and E are fat soluble meaning they accumulate in the body which could be a problem for some. My O/H has done many more blood tests on me but never any checking vitamin levels.
I think you were wise to find a new second O/H and I need to do the same at some point. Mine first thought I had ET but changed it one month later to probably myelofibrosis. My risk analysis for the latter using NGS data came back very low risk, so I am still just taking aspirin, feel fine like I always have, and am very busy.
Hi
I was dx jan 24 and had been on hu for one yr. I could not handle the med I was sick everyday to an unbearable state. The Dr I went to was heartless as well as the PA. She would roll her eyes whenever I complained. I started on hu 5 days a wk then four then three then two until was on hu one day a wk and nothing changed with the side effects. I finally went off it on my own and found a new oncologist which I like very much. My platelets never went beyond normal when I stopped hu. It has been since Feb I stopped hu. I take an aspirin everyday and do dietary things to keep the platelets down. I drink pure 100 percent sugar free Welch's grape juice (quarter of glass) every morning, dark chocolate, pure cranberry juice and green tea every morning. I watch my diet about 50 percent. So far my platelets are at 407-410. My new Dr said we can keep a watch for now. I see him again in 3 most. He knows I had a hard time with hu with the other Dr and said he will research a med out of the class of HU and see if I would try it or not. In mean time he said cont aspirin to prevent stickiness of platelets. I also pop a turmeric once in while to prevent the stickiness of platelets as well. Just hope this all lasts so I don't need meds. Originally my platelets always ran around 500-600. Hope this all helps you, take care!
Hi
I was dx jan 24 and had been on hu for one yr. I could not handle the med I was sick everyday to an unbearable state. The Dr I went to was heartless as well as the PA. She would roll her eyes whenever I complained. I started on hu 5 days a wk then four then three then two until was on hu one day a wk and nothing changed with the side effects. I finally went off it on my own and found a new oncologist which I like very much. My platelets never went beyond normal when I stopped hu. It has been since Feb I stopped hu. I take an aspirin everyday and do dietary things to keep the platelets down. I drink pure 100 percent sugar free Welch's grape juice (quarter of glass) every morning, dark chocolate, pure cranberry juice and green tea every morning. I watch my diet about 50 percent. So far my platelets are at 407-410. My new Dr said we can keep a watch for now. I see him again in 3 most. He knows I had a hard time with hu with the other Dr and said he will research a med out of the class of HU and see if I would try it or not. In mean time he said cont aspirin to prevent stickiness of platelets. I also pop a turmeric once in while to prevent the stickiness of platelets as well. Just hope this all lasts so I don't need meds. Originally my platelets always ran around 500-600. Hope this all helps you, take care!
Hi
I was dx jan 24 and had been on hu for one yr. I could not handle the med I was sick everyday to an unbearable state. The Dr I went to was heartless as well as the PA. She would roll her eyes whenever I complained. I started on hu 5 days a wk then four then three then two until was on hu one day a wk and nothing changed with the side effects. I finally went off it on my own and found a new oncologist which I like very much. My platelets never went beyond normal when I stopped hu. It has been since Feb I stopped hu. I take an aspirin everyday and do dietary things to keep the platelets down. I drink pure 100 percent sugar free Welch's grape juice (quarter of glass) every morning, dark chocolate, pure cranberry juice and green tea every morning. I watch my diet about 50 percent. So far my platelets are at 407-410. My new Dr said we can keep a watch for now. I see him again in 3 most. He knows I had a hard time with hu with the other Dr and said he will research a med out of the class of HU and see if I would try it or not. In mean time he said cont aspirin to prevent stickiness of platelets. I also pop a turmeric once in while to prevent the stickiness of platelets as well. Just hope this all lasts so I don't need meds. Originally my platelets always ran around 500-600. Hope this all helps you, take care!
Hi
I am living with Jak2 mutation. Would love to talk
I was just diagnosed in November 2024.
I'm taking HU, 1000mg a day. The fatigue is just hideous!
Would love to hear from you.
Regards,
MJ
Hello good news my Platelets are now at 333 I feel much better lots of energy and I take 1000 HU mg a day, I take them at night around 8 that way I don't feel the fatigue because I am sleep, Someone on the support group told me to take the pills in the evening before bed it really works. If you would like to talk please let me know. Jen
Hello good news my Platelets are now at 333 I feel much better lots of energy and I take 1000 HU mg a day, I take them at night around 8 that way I don't feel the fatigue because I am sleep, Someone on the support group told me to take the pills in the evening before bed it really works. If you would like to talk please let me know. Jen
Hi Jen— I’m in the same club. ET w/JAK2. Diagnosed last month. Platelets were 720 initially and prescribed 500mg HU. This month platelets down to 500 and now taking 1000mg HU. Not too much fatigue so far, some dull headaches and burning feet at times. Thank you for the tip on taking the HU in the evenings. Wishing you good health & high spirits on this journey! 💛
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.
I've had ET with Jak2 since 2020 and on HU with baby aspirin, I've recently found a connection to endometrial issues. Does anyone else have this problem?
Wishing you all the best your story is quite similar to mine. When my doctor asked me what I did different in 2021 when my blood started going wonky the only thing I could think of was the Covid shot. I am on the hydroxyurea and so far not too many side effects. I cannot deal with however it is a chemo, and I hate the thought of having to take it for a long time. Best wishes.
@pattycz Hello, checking in, it has been a year today and I am still taking the Hydrae, aspirin and still doing good. No, issues tired sometimes but, that maybe age, I retired 43 years with the federal government and teach special ed part time now or whenever I decide to take a class. Keeps me and my mind busy. Take care!
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.
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Hi jello13577,
I really like your approach. I have CALR and not JAK2, but I do have high platelets. I learned this about three months ago at a routine doctor appointment with fill in primary doctors running labs. I got sent to O/H for the first time and she wanted me to take no baby aspirin but just Hydrea 500 mg twice each day which I did not. When she cleared me to take baby aspirin, I did and have been as I have no problem taking baby aspirin. I am 65 with only issue of two painless enlarged joints, no comorbidities so no meds, feel just fine, have lots of energy daily, exercise at least one hour per day walking, biking, doing light weight workouts, stretching, etc. , sleep well at night, and cook and eat healthy food. I do take daily multiple vitamin, and calcium, vit D. Doctors seem to not like vitamins, but to get full daily requirements by eating foods alone it is difficult as I have done nutrition analysis checking. Yes, vitamin K, A, D, and E are fat soluble meaning they accumulate in the body which could be a problem for some. My O/H has done many more blood tests on me but never any checking vitamin levels.
I think you were wise to find a new second O/H and I need to do the same at some point. Mine first thought I had ET but changed it one month later to probably myelofibrosis. My risk analysis for the latter using NGS data came back very low risk, so I am still just taking aspirin, feel fine like I always have, and am very busy.
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Hello good news my Platelets are now at 333 I feel much better lots of energy and I take 1000 HU mg a day, I take them at night around 8 that way I don't feel the fatigue because I am sleep, Someone on the support group told me to take the pills in the evening before bed it really works. If you would like to talk please let me know. Jen
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13 ReactionsHi Jen— I’m in the same club. ET w/JAK2. Diagnosed last month. Platelets were 720 initially and prescribed 500mg HU. This month platelets down to 500 and now taking 1000mg HU. Not too much fatigue so far, some dull headaches and burning feet at times. Thank you for the tip on taking the HU in the evenings. Wishing you good health & high spirits on this journey! 💛
-
Like -
Helpful -
Hug
7 ReactionsI'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.
-
Like -
Helpful -
Hug
13 ReactionsI've had ET with Jak2 since 2020 and on HU with baby aspirin, I've recently found a connection to endometrial issues. Does anyone else have this problem?
-
Like -
Helpful -
Hug
2 Reactions@pattycz Hello, checking in, it has been a year today and I am still taking the Hydrae, aspirin and still doing good. No, issues tired sometimes but, that maybe age, I retired 43 years with the federal government and teach special ed part time now or whenever I decide to take a class. Keeps me and my mind busy. Take care!
-
Like -
Helpful -
Hug
6 ReactionsHi 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.
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