Your doctor will be watching your blood results for positive trends…in this case, getting your platelets down to a ‘normal’ level. It’s encouraging that you’re seeing a difference already. Make sure you talk to your doctor about the symptoms you’re having and even have a list of questions you’d like to ask. Often doctors will adjust the dosage accordingly.
I just turned 67, and was diagnosed with ET JAK2 a few months ago. Although I’m bummed it does answer questions I’ve had about symptoms like headaches, fatigue, dizzyness and even wierd eye symptoms. I started taking 81 mcg aspirin, but then was also having heart rate issues. So now I’m told I have mild atrial fibrillation and have been put on Eliquis and taken off of the aspirin. I do have to say that it helped some of my symptoms and is supposed to be the gold standard for preventing blood clots. And, finally, yesterday I started HU 100mg. Woke up this morning feeling bone achey and headache. I’m hoping those symptoms get better. I’ve also started seeing a naturopathic oncologist in addition to my MPN specialist. I’ve started taking quercetin and curcumin. I’m considering reveratrol. Has anybody else had similar conditions (cardiac and ET); and/or taking complementary medicines/supplements with good results? Thank you
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!
I began Hydrea treatment 10/1/2024. Already losing my hair and having mouth sore issues. I was taking the Hydrea before bed but because I don’t eat before sleep it bothered my stomach. Now I take it at 9:00 am after having a little something for breakfast. This helped.
I started HU in February and my hair soon started falling out in handfuls when I combed it. In July I started taking amino acids for something else, but soon noticed that my hair was no longer falling out, and it was growing back in. Still growing in nice and thick. I’m taking Essential Amino Acids, brand is Double Wood. Maybe it’ll work for you.
Just turned 67 and found I have ET and JAC2 mutation through a blood test and then bone marrow biopsy. I’m on Besremi ( cannot take Hydraea because of other drug interactions). So far I’ve had few side effects but am having to up the injection amount because the drop in platelet count has not yet been significant. Hopefully this will deal with the issue.
I have been on hydroxyurea for approximately two years because of a ET. When I started my doctor prescribed One 500 mg hydroxyurea a day. In the beginning, my platelets were at 780. After starting the hydroxyurea platelets came down to. 450. I stayed on this for a good while. Eventually, he wanted me to take two 500 mg per day because my platelets went up to around 498. I came down with Covid and my platelets went to 570. My oncologist had me to continue with two per day with the exception of Tuesday and Thursday. I take three 500 mg each hydroxyurea. I am taking one baby aspirin a day also. I feel my oncologist is being unusually aggressive and question this regiment. When I read that some people only take one or two baby aspirin a day even if their platelets are in the 500 to 600 range. I am 78 years old and in fairly good health with the exception of this issue. let me know what you think. I am considering getting a second opinion.
For what it’s worth…I am 91 and have been on Hydrox since 2020 with varying amounts daily. Initially I was also on one baby .81 aspirin a day. I am also on Eliquis. I had been taking one baby aspirin daily for probably 40? years when last year my gagle of docs urged me to drop aspirin. They claimed I was at high bleeding internal risk if I fell. I was hesitant to do so but I have listened to Mayo doc since mid-nineties and now that I am in Phila. also have oncologist at U. of Pennsylvania so do what I’m told! Main problem is hydro not only kills excess platelets but knocks down blood cells delivering ovygen so as to create tiredness etc, But hey, most people I know are tired at 91!! My doc would rather me have platelets in 600-700 range than be anemic! Anybody else over 90? My PA doc says he has two patients on hydrox over 100! Hmmm
Merle
I have been on hydroxyurea for approximately two years because of a ET. When I started my doctor prescribed One 500 mg hydroxyurea a day. In the beginning, my platelets were at 780. After starting the hydroxyurea platelets came down to. 450. I stayed on this for a good while. Eventually, he wanted me to take two 500 mg per day because my platelets went up to around 498. I came down with Covid and my platelets went to 570. My oncologist had me to continue with two per day with the exception of Tuesday and Thursday. I take three 500 mg each hydroxyurea. I am taking one baby aspirin a day also. I feel my oncologist is being unusually aggressive and question this regiment. When I read that some people only take one or two baby aspirin a day even if their platelets are in the 500 to 600 range. I am 78 years old and in fairly good health with the exception of this issue. let me know what you think. I am considering getting a second opinion.
Getting a second opinion is a great idea. The goal is a better understanding of your situation, and peace of mind with your treatment.
As you probably know, as soon as we reach 65 years, the docs consider us to be at much greater risk of strokes or clots. So they're inclined to prescribe higher HU doses.
You're right, some ETrs on this forum do just take aspirin.
And some take meds other than HU.
Lots of us take HU, though. Speaking for myself, I'm 70, generally healthy, with platelets in the 500/600 range. I take 10 500mg HU capsules a week (as well as daily low-dose aspirin). At my checkup a couple of weeks ago, I had hoped for a dose reduction. But as my platelet count remains high, I'll carry on.
Living with our "alien" condition is really hard. Asking questions and being comfortable with our treatment is essential!
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Great lowering on platelets. From 697 to 617. Maybe there’s room to slow it down a bit to help my side affects?
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2 ReactionsYour doctor will be watching your blood results for positive trends…in this case, getting your platelets down to a ‘normal’ level. It’s encouraging that you’re seeing a difference already. Make sure you talk to your doctor about the symptoms you’re having and even have a list of questions you’d like to ask. Often doctors will adjust the dosage accordingly.
-
Like -
Helpful -
Hug
5 ReactionsHi, 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!
Blessings for a healthy new year!
Sherry
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Hug
4 ReactionsI started HU in February and my hair soon started falling out in handfuls when I combed it. In July I started taking amino acids for something else, but soon noticed that my hair was no longer falling out, and it was growing back in. Still growing in nice and thick. I’m taking Essential Amino Acids, brand is Double Wood. Maybe it’ll work for you.
-
Like -
Helpful -
Hug
2 ReactionsJust turned 67 and found I have ET and JAC2 mutation through a blood test and then bone marrow biopsy. I’m on Besremi ( cannot take Hydraea because of other drug interactions). So far I’ve had few side effects but am having to up the injection amount because the drop in platelet count has not yet been significant. Hopefully this will deal with the issue.
-
Like -
Helpful -
Hug
3 ReactionsWhat was your platelet count before starting treatment?
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Hug
1 ReactionI have been on hydroxyurea for approximately two years because of a ET. When I started my doctor prescribed One 500 mg hydroxyurea a day. In the beginning, my platelets were at 780. After starting the hydroxyurea platelets came down to. 450. I stayed on this for a good while. Eventually, he wanted me to take two 500 mg per day because my platelets went up to around 498. I came down with Covid and my platelets went to 570. My oncologist had me to continue with two per day with the exception of Tuesday and Thursday. I take three 500 mg each hydroxyurea. I am taking one baby aspirin a day also. I feel my oncologist is being unusually aggressive and question this regiment. When I read that some people only take one or two baby aspirin a day even if their platelets are in the 500 to 600 range. I am 78 years old and in fairly good health with the exception of this issue. let me know what you think. I am considering getting a second opinion.
-
Like -
Helpful -
Hug
2 ReactionsFor what it’s worth…I am 91 and have been on Hydrox since 2020 with varying amounts daily. Initially I was also on one baby .81 aspirin a day. I am also on Eliquis. I had been taking one baby aspirin daily for probably 40? years when last year my gagle of docs urged me to drop aspirin. They claimed I was at high bleeding internal risk if I fell. I was hesitant to do so but I have listened to Mayo doc since mid-nineties and now that I am in Phila. also have oncologist at U. of Pennsylvania so do what I’m told! Main problem is hydro not only kills excess platelets but knocks down blood cells delivering ovygen so as to create tiredness etc, But hey, most people I know are tired at 91!! My doc would rather me have platelets in 600-700 range than be anemic! Anybody else over 90? My PA doc says he has two patients on hydrox over 100! Hmmm
Merle
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Hug
6 ReactionsNo ski diving with low platelets
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2 ReactionsGetting a second opinion is a great idea. The goal is a better understanding of your situation, and peace of mind with your treatment.
As you probably know, as soon as we reach 65 years, the docs consider us to be at much greater risk of strokes or clots. So they're inclined to prescribe higher HU doses.
You're right, some ETrs on this forum do just take aspirin.
And some take meds other than HU.
Lots of us take HU, though. Speaking for myself, I'm 70, generally healthy, with platelets in the 500/600 range. I take 10 500mg HU capsules a week (as well as daily low-dose aspirin). At my checkup a couple of weeks ago, I had hoped for a dose reduction. But as my platelet count remains high, I'll carry on.
Living with our "alien" condition is really hard. Asking questions and being comfortable with our treatment is essential!
-
Like -
Helpful -
Hug
8 Reactions