64 year old black female just wondering were this is coming from. I contribute this to having the covid vaccination as my blood work was always good until I took the shoot. I will start taking hydrea 500 this week. A lot of unknown information. Can I still work, will I live a normal life i am active had plans to retire and travel in the next 2 years just so afraid and mad.
"Afraid and mad" is where this weird, weird diagnosis leaves us.
Who even knew you could have too many platelets?
It's really scary. And unfortunately no one you know, probably not even your doctor, can help much.
Certainly there's suspicion that covid shots may be a factor.
But ET was identified more than 100 years ago. And people had it long before it was identified. There were no covid shots back then.
Sadly, no one yet knows what causes ET.
But others on this forum have lived with it for decades! It is NOT a death sentence.
It's also not a walk in the park. That's why taking HU (hydroxyurea) is important. For most of us, HU brings our platelet levels down.
This restores our energy and (some of the time!) relieves the terrible headaches ET can give us.
What will be your initial dosage? I hope you'll be started off with a low dose, then get careful monitoring (with blood draws) to see how HU is helping you.
Most of us like to take HU with food. We also find that drinking lots of water is good.
You have a million question, and this is where you'll find answers.
You're among friends, and we're all ET aliens together.
I learned I had ET at my annual Medicare checkup 2 years ago, my platelets were over 900,000. By the time I saw an oncologist 3 days later the count was over a million. They put me on 500 mg of Hydrea right away. Twelve months of weekly blood tests and varying doses of Hydrea later we have settled in on 4 days a week 1,000 mg Hydrea and 3 days a week 500 mg. Now a year after that my platelet count is down to 315,000, the lowest it’s ever been. I’ve had no obvious side effects or symptoms from the Hydrea or the ET and consider myself blessed for that. I stay active but am tired every day. It doesn’t keep me from doing things. It just takes longer.
My first oncologist told me everyone’s different, but if you’re like most people with ET when you die it won’t be because of ET*.
*as long as you take your Hydrea 😊
64 year old black female just wondering were this is coming from. I contribute this to having the covid vaccination as my blood work was always good until I took the shoot. I will start taking hydrea 500 this week. A lot of unknown information. Can I still work, will I live a normal life i am active had plans to retire and travel in the next 2 years just so afraid and mad.
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.
yes, first year or so, the blood tests and meds are up/down and sideways, first every week, then every other week, then once a month and now every 3 months. I've been on HU+baby aspirin for almost 4 years now....my count is usually between high 300 and mid-400. I've had a total of 7 covid shots and 4 flu shots. The only shot that affected my count was the shingles shot, but there is a research paper that mentions the shingrix and platelets. My count dropped dramatically, but then regained to "normal" after about 3 months. Then I had to have blood tests every few weeks, until I got back to "normal"......all the best....
I have ET Jak2 x 18 months now 71 yr old active, vegetarian , on ASA 2 pills once a day plt jumped to 702 , put on HU 500 mg daily...1 month later they were 333 and I was taken off I will be getting recheck wed ...feels like I am constantly getting blood work every 2-4 wk x 18 months...
I joined the JAK2 club in 2018. I have Polycythemia Vera which is a MPN sister of your ET. I remember my blood doctor telling me I have a genetic mutation of the Janus Kinase gene. (JAK2) I was epecting to get some kind of super hero powers like spiderman but that never happened. I take a 500 mg Hydroxyurea every day which I call "Chemo in a pill." My platelets are under control and I have very few side effects. I do get fatigue in the late afternoon and go to sleep early. Is that just because I am a 65 year old man? Who knows. My advice is to stay active and enjoy every day. From Kentucky, in the heartland of America.
64 year old black female just wondering were this is coming from. I contribute this to having the covid vaccination as my blood work was always good until I took the shoot. I will start taking hydrea 500 this week. A lot of unknown information. Can I still work, will I live a normal life i am active had plans to retire and travel in the next 2 years just so afraid and mad.
I joined the JAK2 club in 2018. I have Polycythemia Vera which is a MPN sister of your ET. I remember my blood doctor telling me I have a genetic mutation of the Janus Kinase gene. (JAK2) I was epecting to get some kind of super hero powers like spiderman but that never happened. I take a 500 mg Hydroxyurea every day which I call "Chemo in a pill." My platelets are under control and I have very few side effects. I do get fatigue in the late afternoon and go to sleep early. Is that just because I am a 65 year old man? Who knows. My advice is to stay active and enjoy every day. From Kentucky, in the heartland of America.
Yes, I take 500 mg twice a day, 4 days a week. Started at 500 mg twice a day every day and gradually backed down to current dosage. Other than some short (less than 30 seconds) intense headaches while on the daily regimen,
I have had no side effects.
I was diagnosed with this mutation and ET last Fall, and started Hydroxyurea as my platelet count was in the mid 700s and climbing. I have stabilized with platelets hanging right at 192 for the last six months and take HU only 4 days a week. I consider this a win!
Are you taking a high dose of HU four days a week? I have never taken more than one 500 mg tablet, now at four days a week. My last lab was 515. That is great getting to 192 and I hope it stabilizes at that for you. LabCorp says 150-450 is normal.
Congrats! Eileen
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Hello to you, with hugs.
"Afraid and mad" is where this weird, weird diagnosis leaves us.
Who even knew you could have too many platelets?
It's really scary. And unfortunately no one you know, probably not even your doctor, can help much.
Certainly there's suspicion that covid shots may be a factor.
But ET was identified more than 100 years ago. And people had it long before it was identified. There were no covid shots back then.
Sadly, no one yet knows what causes ET.
But others on this forum have lived with it for decades! It is NOT a death sentence.
It's also not a walk in the park. That's why taking HU (hydroxyurea) is important. For most of us, HU brings our platelet levels down.
This restores our energy and (some of the time!) relieves the terrible headaches ET can give us.
What will be your initial dosage? I hope you'll be started off with a low dose, then get careful monitoring (with blood draws) to see how HU is helping you.
Most of us like to take HU with food. We also find that drinking lots of water is good.
You have a million question, and this is where you'll find answers.
You're among friends, and we're all ET aliens together.
-
Like -
Helpful -
Hug
9 ReactionsI learned I had ET at my annual Medicare checkup 2 years ago, my platelets were over 900,000. By the time I saw an oncologist 3 days later the count was over a million. They put me on 500 mg of Hydrea right away. Twelve months of weekly blood tests and varying doses of Hydrea later we have settled in on 4 days a week 1,000 mg Hydrea and 3 days a week 500 mg. Now a year after that my platelet count is down to 315,000, the lowest it’s ever been. I’ve had no obvious side effects or symptoms from the Hydrea or the ET and consider myself blessed for that. I stay active but am tired every day. It doesn’t keep me from doing things. It just takes longer.
My first oncologist told me everyone’s different, but if you’re like most people with ET when you die it won’t be because of ET*.
*as long as you take your Hydrea 😊
-
Like -
Helpful -
Hug
9 ReactionsYou’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.
-
Like -
Helpful -
Hug
6 Reactionsyes, first year or so, the blood tests and meds are up/down and sideways, first every week, then every other week, then once a month and now every 3 months. I've been on HU+baby aspirin for almost 4 years now....my count is usually between high 300 and mid-400. I've had a total of 7 covid shots and 4 flu shots. The only shot that affected my count was the shingles shot, but there is a research paper that mentions the shingrix and platelets. My count dropped dramatically, but then regained to "normal" after about 3 months. Then I had to have blood tests every few weeks, until I got back to "normal"......all the best....
-
Like -
Helpful -
Hug
4 ReactionsI have ET Jak2 x 18 months now 71 yr old active, vegetarian , on ASA 2 pills once a day plt jumped to 702 , put on HU 500 mg daily...1 month later they were 333 and I was taken off I will be getting recheck wed ...feels like I am constantly getting blood work every 2-4 wk x 18 months...
-
Like -
Helpful -
Hug
6 Reactions64 year old black female just wondering were this is coming from. I contribute this to having the covid vaccination as my blood work was always good until I took the shoot. I will start taking hydrea 500 this week. A lot of unknown information. Can I still work, will I live a normal life i am active had plans to retire and travel in the next 2 years just so afraid and mad.
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8 ReactionsWelcome @lindamarie63. I hope you saw the helpful replies from several members living with ET with the JAK2 mutation. Here are some additional discussions you may find helpful:
- Essential Thrombocythemia: Looking for information and support https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
- All ET discussions: https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=Essential+Thrombocythemia+#discussion-listview
- JAK2 https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=JAK2&index=discussions
Lindamarie, is this a new diagnosis for you? What treatment options have been suggested? How are you doing?
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2 ReactionsDo you phlebotomies? If yes how do you tolerate them? And how often do you do them?
Yes, I take 500 mg twice a day, 4 days a week. Started at 500 mg twice a day every day and gradually backed down to current dosage. Other than some short (less than 30 seconds) intense headaches while on the daily regimen,
I have had no side effects.
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Like -
Helpful -
Hug
4 ReactionsAre you taking a high dose of HU four days a week? I have never taken more than one 500 mg tablet, now at four days a week. My last lab was 515. That is great getting to 192 and I hope it stabilizes at that for you. LabCorp says 150-450 is normal.
Congrats! Eileen
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Hug
6 Reactions