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.
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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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Hug
11 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
5 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
6 Reactions