1. < Blood Cancers & Disorders

Essential Thrombocythemia: Looking for information and support

Posted by shenriq @shenriq, Jun 4, 2018

I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!

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sregiani | @sregiani | Apr 19, 2023
In reply to @christinele "I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight..." + (show)
@christinele

I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight and was wondering how I can just follow discussions on ET without looking at all the blood disorders.
my doctor prescribed hydrea. I opted to wait, and have been taking a low dose aspirin nightly . My platelets have been in the 500s. I was in Florida when I received the diagnosis so I haven’t been back to see my doctor. My next blood work is next week and my appointment is the first week of May.
I have been doing research regarding using vitamin D to reduce platelet count. I’m going to talk to him about it because I don’t want to go on a medication unless absolutely necessary.. if someone can add me to this thread I would appreciate it.

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My functional medicine doc has me taking 10,000 IU Vit D daily to keep my levels between 55-90. I live in Michigan, and while I try and get outside daily, I am fair skinned of Northern European descent, and otherwise my vitamin D tanks very low. Talk to your doc and get tested. Vit D us related to so many processes, but as someone else said, it is not necessarily related to ET w/JAK2.

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eileen11108 | @eileen11108 | Apr 19, 2023
In reply to @christinele "I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight..." + (show)
@christinele

I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight and was wondering how I can just follow discussions on ET without looking at all the blood disorders.
my doctor prescribed hydrea. I opted to wait, and have been taking a low dose aspirin nightly . My platelets have been in the 500s. I was in Florida when I received the diagnosis so I haven’t been back to see my doctor. My next blood work is next week and my appointment is the first week of May.
I have been doing research regarding using vitamin D to reduce platelet count. I’m going to talk to him about it because I don’t want to go on a medication unless absolutely necessary.. if someone can add me to this thread I would appreciate it.

Jump to this post

Christinele,

There are also a lot of ET JAK2 discussions on healthunlocked.com. It originates in the United Kingdom but people around the world participate. You can also type in your interest and it will come up with older posts.

Best wishes, Eileen

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klcc | @klcc | Apr 19, 2023

I am about to start taking Hydrea. I wonder if taking it just before bed would alleviate some symptoms.

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3 replies
eileen11108 | @eileen11108 | Apr 19, 2023

My hematologist told me to take half hour before or after eating with full glass of water, Told you should strive for minimum of 64 ounces of fluid daily to help with toxic effects of drug,

I took my med after breakfast but have had headache issues. I am on a short stoppage of taking HU and expect to be back on it soon. I plan on trying after dinner this time.

Best wishes, Eileen

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annetterzam | @annetterzam | Apr 19, 2023
In reply to @christinele "I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight..." + (show)
@christinele

I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight and was wondering how I can just follow discussions on ET without looking at all the blood disorders.
my doctor prescribed hydrea. I opted to wait, and have been taking a low dose aspirin nightly . My platelets have been in the 500s. I was in Florida when I received the diagnosis so I haven’t been back to see my doctor. My next blood work is next week and my appointment is the first week of May.
I have been doing research regarding using vitamin D to reduce platelet count. I’m going to talk to him about it because I don’t want to go on a medication unless absolutely necessary.. if someone can add me to this thread I would appreciate it.

Jump to this post

I was diagnosed in December of this past year. Same thing, Jak2 mutation. I tried some alternative things too, but nothing helped. I reluctantly went on 500 mgs of HU 3 x a week and have been fortunate. I've had no negative side effects and my platelets are now in the normal range. If you really need the meds take them. You don't want a stoke or heart attack. Actually your numbers aren't that high, mine were in the upper 600's. My doctor tracked my platelet count for 6 months and it continued to go up. Good luck!

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2 replies
christinele | @christinele | Apr 19, 2023
In reply to @annetterzam "I was diagnosed in December of this past year. Same thing, Jak2 mutation. I tried some..." + (show)
@annetterzam

I was diagnosed in December of this past year. Same thing, Jak2 mutation. I tried some alternative things too, but nothing helped. I reluctantly went on 500 mgs of HU 3 x a week and have been fortunate. I've had no negative side effects and my platelets are now in the normal range. If you really need the meds take them. You don't want a stoke or heart attack. Actually your numbers aren't that high, mine were in the upper 600's. My doctor tracked my platelet count for 6 months and it continued to go up. Good luck!

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Thank you! Mine are in the low 500’s and he originally prescribed 1000 a day. After I though about it I decided not to take them until I saw him again which won’t be till the beginning of May.

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1 reply
eileen11108 | @eileen11108 | Apr 20, 2023
In reply to @christinele "Thank you! Mine are in the low 500’s and he originally prescribed 1000 a day. After..." + (show)
@christinele

Thank you! Mine are in the low 500’s and he originally prescribed 1000 a day. After I though about it I decided not to take them until I saw him again which won’t be till the beginning of May.

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If your platelets are only in the 500s I personally would not want to start with 1000 mg a day. Some people take 500 mg every other day or three days a week.

Did you start on a low dose aspirin to protect you from blood clots?

Eileen

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1 reply
christinele | @christinele | Apr 20, 2023

Yes, I’m taking a low dose aspirin. Am going for a blood test next Tuesday. I have made up my mind am not going on the medicine unless they start rising, and even then definitely not starting at 1000 a day.
Thank you!

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sand103 | @sand103 | Apr 20, 2023
In reply to @annetterzam "I was diagnosed in December of this past year. Same thing, Jak2 mutation. I tried some..." + (show)
@annetterzam

I was diagnosed in December of this past year. Same thing, Jak2 mutation. I tried some alternative things too, but nothing helped. I reluctantly went on 500 mgs of HU 3 x a week and have been fortunate. I've had no negative side effects and my platelets are now in the normal range. If you really need the meds take them. You don't want a stoke or heart attack. Actually your numbers aren't that high, mine were in the upper 600's. My doctor tracked my platelet count for 6 months and it continued to go up. Good luck!

Jump to this post

Ugh I was put on 500 mg. To start more labs,1000 mg… now on 1500 mg daily. Platelets at 774 now!

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2 replies
nohrt4me | @nohrt4me | Apr 20, 2023

Everyone, I learned years ago that platelet level was not the most important factor in deciding if you needed to start meds. I know it seems weird, but any elevated platelet count is a concern if you are over 60, double concern if you are JAK2, triple concern if you've had a clot in the past.

I am CALR and didn't go on HU until I was 63 and platelets hit 800s. Someone who is JAK2 with a prior clot might need to go on HU in their 30s, even if platelets are in the 500s.

Platelet counts measure whether meds are working and indicate progression.

Doctors use your IPSET score to make HU decisions. Here's the test: https://thehematologist.org/ipset-thrombosis/

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