Good morning, I was diagnosed Nov 2022 with ET. Taking 1000 mg
Hydroxuria daily. Feel great, used to be tired in the afternoon, not so
much anymore. My platelets are stable in the 350 to 390 range.
Female, 69 years old.
Had total Hysterectomy 6 weeks ago. I looked up my pre op
blood work, noticed that my Rdw is high, 55 fl , everything else looked good.
10 days before I had my 4 months check up with my Hematologist.
My rdw was 45 fl, everything else looked good. Has anyone had this problem?
I do not take any other medications.
My next check up is not until the end of Febr. 2025. With the Christmas
and new Year season it is hard to get a hold of anybody. Will contact
my Dr. after new year.
Thank you for reading my post.
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
Yes, being anemic has really caused too much tiredness. I have always been high energy. Playing tennis and golf. This, before ET. My last platelet count was 432 and has stayed in that area for months. I love that your doctors opinion that 600-700 range rather than being anemic is ok. I am in NC but may go to Mayo Clinic Thanks for your reply
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.
Second opinion can be helpful as long as it's with a doc who has more experience with MPNs than the original doc. Sometimes a good question to ask is, How many patients do you have with ET?
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!
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.
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.
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Good morning, I was diagnosed Nov 2022 with ET. Taking 1000 mg
Hydroxuria daily. Feel great, used to be tired in the afternoon, not so
much anymore. My platelets are stable in the 350 to 390 range.
Female, 69 years old.
Had total Hysterectomy 6 weeks ago. I looked up my pre op
blood work, noticed that my Rdw is high, 55 fl , everything else looked good.
10 days before I had my 4 months check up with my Hematologist.
My rdw was 45 fl, everything else looked good. Has anyone had this problem?
I do not take any other medications.
My next check up is not until the end of Febr. 2025. With the Christmas
and new Year season it is hard to get a hold of anybody. Will contact
my Dr. after new year.
Thank you for reading my post.
-
Like -
Helpful -
Hug
3 ReactionsYes, being anemic has really caused too much tiredness. I have always been high energy. Playing tennis and golf. This, before ET. My last platelet count was 432 and has stayed in that area for months. I love that your doctors opinion that 600-700 range rather than being anemic is ok. I am in NC but may go to Mayo Clinic Thanks for your reply
-
Like -
Helpful -
Hug
3 ReactionsSecond opinion can be helpful as long as it's with a doc who has more experience with MPNs than the original doc. Sometimes a good question to ask is, How many patients do you have with ET?
-
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Helpful -
Hug
4 ReactionsOther knowledgeable voices here have also questioned taking daily aspirin. This is a great question for each of us to bring to our own doctors.
For what it's worth, in my case (70 years old, platelets 500/600), I was recently told to continue with the low-dose aspirin.
I'm glad your doctor is carefully considering exactly what's best for you, Merle. Platelets are not the only important metric.
Wishing you 90 more years!
-
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Helpful -
Hug
4 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 ReactionsNo ski diving with low platelets
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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
-
Like -
Helpful -
Hug
6 ReactionsI 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 ReactionsWhat was your platelet count before starting treatment?
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Hug
1 ReactionJust 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 Reactions