1. < Blood Cancers & Disorders

People living with ET and taking Hydrea: Anybody setting records?

Posted by lefsequeen @lefsequeen, Feb 5, 2021

I've been wondering if there are any stats on people who have lived the longest with ET and taking Hydrea? As I hit the 30-year mark soon, I'd like to know about long-term survivors! 🙂 Guess I'm looking for some encouragement--haha!

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eileen11108 | @eileen11108 | Dec 8, 2022
In reply to @pumpkin1 "Though I was diagnosed with ET, and JAK2 this summer, I still hesitate to take Hydrea..." + (show)
@pumpkin1

Though I was diagnosed with ET, and JAK2 this summer, I still hesitate to take Hydrea because of my age (nearly 81) and CBC numbers are still in 600s. Does anyone know what statistics are of life expectancy of those who do not take a chemo drug? Have any studies been done re. this? What exactly is low risk and high risk? Any input you have will be appreciated.

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International Prognostic Score for ET
Patient age less than 60 (0 points)
Older than 60 (1 point)

Prior thrombotic event
No: (0 points). Yes: (2 points)

Cardio vascular risks factors
No: (0 points). Yes: ( 1 point)

JAK2 V617 mutation detected
No: (0 points). Yes: (2 points)

Low risk is 0-1
Intermediate is 2
high is 3-6

Eileen

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1 reply
pgallina | @pgallina | Dec 8, 2022
In reply to @lefsequeen "Honestly, I don't know if I have any tips! It was a really rare condition back..." + (show)
@lefsequeen

Honestly, I don't know if I have any tips! It was a really rare condition back when I was dx by bone marrow biopsy in the early 90s, and there really weren't very many support groups on-line from which to gather information. I was initially very concerned. At that time, anagrelide was new, and the concerns about long-term usage of hydroxyurea were very high. I used HU for awhile, then tried AG, but had terrible side effects from AG, so went back on HU. I was being treated by a hematologist in Ft. Wayne, IN but decided to travel to Rochester Mayo to see an ET specialist there. He felt that being as young as I was (early 40s by that time) I could manage with only daily 81 mg aspirin. So, I went off HU but soon after had some frightening TIAs. That helped me decide HU would be the best option for me. A decade or so ago I made an appointment with Dr. Tefferi at Mayo Rochester to see if my current treatment protocol was best for me and to learn if I had the JAK2 mutation (which I do). He said I'd likely die of something else before I'd die of ET, so stop worrying! 🙂 Therefore, since that time, I've basically taken my 500 mg HU and 81 mg aspirin daily, gone for quarterly CBCs and regular checkups with my regular hematologist and lived normally. I doubt that anyone much knows I have this blood condition. My advice? Stay active and live happily. If you begin to have an issues, your body will tell you. Otherwise, there are much more serious things in my life to worry about! 🙂 I'm happy to field questions, tho, as it has been a journey with definite ups and downs. It's most frightening when one doesn't have information, I firmly believe!

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I was diagnosed with ET and I now take Hydrea and .81 aspirin looking for as much information

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1 reply
lefsequeen | @lefsequeen | Dec 8, 2022
In reply to @pgallina "I was diagnosed with ET and I now take Hydrea and .81 aspirin looking for as..." + (show)
@pgallina

I was diagnosed with ET and I now take Hydrea and .81 aspirin looking for as much information

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Any specific questions?

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1 reply
lefsequeen | @lefsequeen | Dec 8, 2022
In reply to @eileen11108 "International Prognostic Score for ET Patient age less than 60 (0 points) Older than 60 (1..." + (show)
@eileen11108

International Prognostic Score for ET
Patient age less than 60 (0 points)
Older than 60 (1 point)

Prior thrombotic event
No: (0 points). Yes: (2 points)

Cardio vascular risks factors
No: (0 points). Yes: ( 1 point)

JAK2 V617 mutation detected
No: (0 points). Yes: (2 points)

Low risk is 0-1
Intermediate is 2
high is 3-6

Eileen

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Well, I think I fall into the high risk category, as I'm older than 60, have had a thrombotic event and have the JAK2 mutation. But I've been on HU 500 mg since I was 39. So I'm closing in on 30 years with the dx and taking HU. I feel fine. Just saw my hematologist and I don't see any reasons I won't go on for quite some time yet!

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pgallina | @pgallina | Dec 9, 2022
In reply to @lefsequeen "Any specific questions?" + (show)
@lefsequeen

Any specific questions?

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I’m just so worried about “what are my platelet levels” is the medicine safe. I don’t want to have a stroke. I’m often fatigued, headache and nauseous. It’s scary

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2 replies
nohrt4me | @nohrt4me | Dec 10, 2022
In reply to @huronshores "Great to hear of someone doing well. Cheers. One thing I would say to consider, is..." + (show)
@huronshores

Great to hear of someone doing well. Cheers. One thing I would say to consider, is how much of a dose of Hydroxyurea a person is on. Personally, my numbers have been up and down. This has resulted in pretty large ‘doses’ of Hydroxyurea. Presently 23x500mg capsules per week. So my concern has been to watch carefully for side effects..hair loss being one etc. At 82 yes I would like to keep other parts of me as healthy as possible.
(also, recently had hip replacement surgery so have been recovering from that, with Physio etc) I think that is probably the case with most of us, that the Essential Thrombocythemia is not the only thing going on. Anyway, it is a relief to have the hip looked after as it was about 2 1/2 .. 3 year wait, due to COVID keeping our hospitals too busy etc. Good luck all.

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"At 82 yes I would like to keep other parts of me as healthy as possible.
(also, recently had hip replacement surgery so have been recovering from that, with Physio etc) I think that is probably the case with most of us, that the Essential Thrombocythemia is not the only thing going on. "

Very true. I have severe scoliosis (congenital spinal curvature) that causes nerve tingles, and a bad heart valve that causes dizziness. These are also symptoms of ET. I presume the migraines w flashing lights and fatigue are ET symptoms. These are better since I started HU.

Encouraged to hear you had major surgery with ET while taking HU. A mitral valve repair is in my near future. They are talking open-heart surgery, but I am hoping to make it to 70 (I'm 68) so I can have the trans cath procedure. Quicker recovery time, which would be much easier on my back. Given that the back problem will worsen with time, I'm less about living a long time than maximizing the quality of my time.

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lefsequeen | @lefsequeen | Dec 10, 2022
In reply to @pgallina "I’m just so worried about “what are my platelet levels” is the medicine safe. I don’t..." + (show)
@pgallina

I’m just so worried about “what are my platelet levels” is the medicine safe. I don’t want to have a stroke. I’m often fatigued, headache and nauseous. It’s scary

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When were you diagnosed? How old were you? I remember worrying about the safety of the HU, but when I quit HU and experienced a TIA, I came to peace with it and decided the HU was safer for me than going without. After that, I made a conscious choice to quit the worrying and constant research and just live life. In fact, I don't even think about it anymore after 30 years. Depending on how long you've been on the HU, I would wonder how much anxiety creates your symptoms, as anxiety definitely takes a physical toll. It's hard to say if it's the disease or the meds causing the symptoms. But I'd like to know more about your journey!

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pgallina | @pgallina | Dec 10, 2022

Diagnosed 11/19/2022 and started the med. The hematologist was watching the platelet level for the past 5 years. Red platelets reached 915 in November. I’m 68 years old I go to the gym daily and work per diem as a social worker.

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1 reply
nohrt4me | @nohrt4me | Nov 30, 2023
In reply to @taisaint "What is TIAs?" + (show)
@taisaint

What is TIAs?

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Stands for transient ischemic attack. Sometimes called mini strokes. They mimic stroke symptoms but resolve quickly and may be precursors to strokes: https://www.mayoclinic.org/diseases-conditions/transient-ischemic-attack/symptoms-causes/syc-20355679

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