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 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 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
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
Hi, MariaAlive! I also see a naturopath oncologist and an MPN heme doc. My PCP is a functional medicine doc, so all 3 work together and are in agreement on my care.
72 y/o female, ET wJAK2 for 2 years holding in the high 600s only taking 81 mg aspirin, no HU.
I’ve been on 4-hour time release Resveratrol by Reserveage for probably close to 10 years now.
They’ve said not to use a cheaper brand because of fillers. Also on quercetin and curcumin, Vit D3 w/K2, Vit C, and a B-complex w/Biotin.
Work w/your Docs, talk about your average diet and exercise, and how often you are outside getting fresh air and sunshine. I’m in MI where skies are grey all winter long. Without supplemental Vit D, my levels easily fall below 35. To stay close to 80, I need to take 10,000 IU/day. But here’s the thing, work with your Docs: If I go to Florida for weeks at a time and I’m outdoors every day I stop taking the vitamin D or my levels can approach 100 or more. Delicate balance!
It takes a while to figure it all out. Supplements work slowly, so be patient with your Docs and yourself. This is something we LIVE with. It’s going to be ok!
Hi Sherry, hope all is well. I am currently only on Aspirin. My hemo diagnosed the Jak2 confirmed bmb. I have now left her and am seeing an MPN specialist at sloan. he is conducting his own tests but upon our first meeting he wants me on HU. I told him we will discuss on our 2nd meeting after having all of the test results. I asked him about vitamins and he was clueless. i am a big believer. been taking vitamins since my 20's im 59. I also have vitiligo (24) and hashimotos (48). all under control. Light therpay for vitiligo and synthroid for thyroid. I ask the doc about any other meds since the HU is an issue for skin. I need to continue my light therapy. he told me hu is the gold standard. I'm honestly in great shape, exercise eat well don't smoke anymore and occasionally a glass of wine. My hemo scared the heck out of me since im on aspirin therapy and took me off my K2 and vit C and told me not to drink. my numbers are in the mid to high 600's. My PCP said i can take the K2 with my D. Anyway, sorry for the long story but how did you find a naturopath oncologist? I'm in NJ. Thank you so much.
Congratulations, Jennifer on such a dramatic lowering of your platelet count!
It's likely your oncologist will continue monitoring your count on a regular basis. Blood work numbers may fluctuate a bit from time to time. Don't worry! That's normal with MPNs.
Thank you for your decades of government service. Please do something wonderful now. You've earned it!
Thank you if it wasn't for the comments I would be a nervous wreck. Tha is for letting me know the numbers fluctuate that way I want be upset if they do. This report did make me joy my vacation better.
Hello update, my platelet counts finally got to 340 from 1000 back in December, after my Hydrea was increased to 1000 a day. I hope it stays that way and wonder where I will go from here. I have my energy back, just retired at 65 yrs old from working 40 years for the federal government. Plan to travel, teach a little and enjoy life.
Jennifer
Congratulations, Jennifer on such a dramatic lowering of your platelet count!
It's likely your oncologist will continue monitoring your count on a regular basis. Blood work numbers may fluctuate a bit from time to time. Don't worry! That's normal with MPNs.
Thank you for your decades of government service. Please do something wonderful now. You've earned it!
You’re in the right place. There is a lot of good information here. Many of us are living normal lives while taking our daily Hydrea dose with little or no side effects. I turned 70 this year and I’m still quite active. Fatigue is the biggest problem, but is that because I’m 70? It doesn’t stop me from playing ice hockey 3 times a week and finishing the inside of a cabin.
Work with your doctor, follow your numbers and be your best advocate! You got this.
Hello update, my platelet counts finally got to 340 from 1000 back in December, after my Hydrea was increased to 1000 a day. I hope it stays that way and wonder where I will go from here. I have my energy back, just retired at 65 yrs old from working 40 years for the federal government. Plan to travel, teach a little and enjoy life.
Jennifer
Headaches are definitely a side effect. I got them when I first started taking HU 500 mg twice a day, 7 days a week. My Heme/Onc started decreasing my dosage as my platelet numbers came down and now, with my platelet count around 200, I take it twice a day, four days a week. As the dosage decreased, the headaches did too and now I don't get them at all. Mine were sudden and severe, but of very short duration - less than 30 seconds. They occurred only when I stood up suddenly and would literally stop me in my tracks.
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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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2 ReactionsHi
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!
-
Like -
Helpful -
Hug
8 ReactionsHi
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
-
Like -
Helpful -
Hug
2 ReactionsHi Sherry, hope all is well. I am currently only on Aspirin. My hemo diagnosed the Jak2 confirmed bmb. I have now left her and am seeing an MPN specialist at sloan. he is conducting his own tests but upon our first meeting he wants me on HU. I told him we will discuss on our 2nd meeting after having all of the test results. I asked him about vitamins and he was clueless. i am a big believer. been taking vitamins since my 20's im 59. I also have vitiligo (24) and hashimotos (48). all under control. Light therpay for vitiligo and synthroid for thyroid. I ask the doc about any other meds since the HU is an issue for skin. I need to continue my light therapy. he told me hu is the gold standard. I'm honestly in great shape, exercise eat well don't smoke anymore and occasionally a glass of wine. My hemo scared the heck out of me since im on aspirin therapy and took me off my K2 and vit C and told me not to drink. my numbers are in the mid to high 600's. My PCP said i can take the K2 with my D. Anyway, sorry for the long story but how did you find a naturopath oncologist? I'm in NJ. Thank you so much.
-
Like -
Helpful -
Hug
3 ReactionsThank you if it wasn't for the comments I would be a nervous wreck. Tha is for letting me know the numbers fluctuate that way I want be upset if they do. This report did make me joy my vacation better.
JENNIFER
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Helpful -
Hug
4 ReactionsCongratulations, Jennifer on such a dramatic lowering of your platelet count!
It's likely your oncologist will continue monitoring your count on a regular basis. Blood work numbers may fluctuate a bit from time to time. Don't worry! That's normal with MPNs.
Thank you for your decades of government service. Please do something wonderful now. You've earned it!
-
Like -
Helpful -
Hug
4 ReactionsHello update, my platelet counts finally got to 340 from 1000 back in December, after my Hydrea was increased to 1000 a day. I hope it stays that way and wonder where I will go from here. I have my energy back, just retired at 65 yrs old from working 40 years for the federal government. Plan to travel, teach a little and enjoy life.
Jennifer
-
Like -
Helpful -
Hug
10 ReactionsHeadaches are definitely a side effect. I got them when I first started taking HU 500 mg twice a day, 7 days a week. My Heme/Onc started decreasing my dosage as my platelet numbers came down and now, with my platelet count around 200, I take it twice a day, four days a week. As the dosage decreased, the headaches did too and now I don't get them at all. Mine were sudden and severe, but of very short duration - less than 30 seconds. They occurred only when I stood up suddenly and would literally stop me in my tracks.
-
Like -
Helpful -
Hug
4 Reactions