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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jleshe447 | @jleshe447 | Apr 21, 2023
In reply to @bevjg "Don't assume your will have side effects from Hydrea. My platelets were 600s for 10 years..." + (show)
@bevjg

Don't assume your will have side effects from Hydrea. My platelets were 600s for 10 years and hemotologist just watched it. No treatment. Then I ended up in hospital with serious pulmonary embolisms. New hemotologist tested for JAK2 and it was positive. Immediately began 500 mg of Hydrea daily. Now in normal range with no side effects BUT I do have serious condition resulting from the PEs. Do what needs to be done to prevent PEs!!!!!!!!

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When I started the Hydrea, I also took it at night. But I had the utmost freakish dreams that I just couldn't take!!! lol. I take mine in the morning with toast.

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bevjg | @bevjg | Apr 21, 2023

I was asymptomatic with high platelets for 10 years with no treatment. Just monitored platelet counts. Then had serious pulmonary embolisms. Tested positive for JAK2 and began 500 mg of Hydrea daily. No side effects. However, I have serious permanent damage from the PEs. Do all you can to avoid PEs.

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1995victoria | @1995victoria | Apr 21, 2023
In reply to @klcc "I am about to start taking Hydrea. I wonder if taking it just before bed would..." + (show)
@klcc

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

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I take it 1/2-3/4 hr before going to bed, with water and maybe few spoonfuls of yogurt, works for me

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tokyolin | @tokyolin | Apr 21, 2023

Marylynda, have you been tested for temporal arteritis? I had it about ten years ago,and presented with some of the same symptoms you described.

I am 82 and was diagnosed with ET six months ago. At first, the oncologist put me on a low dose aspirin daily.
My platelet count was up to 609 so she put my hydroxyurea. 500 mg daily. I freaked out when I saw the label on the medicine bottle that said you had to wear plastic gloves when handling both the bottle and the medicine. Is this drug a form of chemotherapy? No real symptoms except fatigue and high platelet count.

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2 replies
klcc | @klcc | Apr 21, 2023
In reply to @tokyolin "Marylynda, have you been tested for temporal arteritis? I had it about ten years ago,and presented..." + (show)
@tokyolin

Marylynda, have you been tested for temporal arteritis? I had it about ten years ago,and presented with some of the same symptoms you described.

I am 82 and was diagnosed with ET six months ago. At first, the oncologist put me on a low dose aspirin daily.
My platelet count was up to 609 so she put my hydroxyurea. 500 mg daily. I freaked out when I saw the label on the medicine bottle that said you had to wear plastic gloves when handling both the bottle and the medicine. Is this drug a form of chemotherapy? No real symptoms except fatigue and high platelet count.

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Hydrea is a chemotherapy.

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remo1110 | @remo1110 | Apr 21, 2023
In reply to @sand103 "I’m 63. Did you get tested for Jak-2 mutation?" + (show)
@sand103

I’m 63. Did you get tested for Jak-2 mutation?

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Yes I did and it came back positive. for Jak 2 mutation.

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lynnevb | @lynnevb | Apr 28, 2023

Hi, I am new to this support group. I am 68yo. Diagnosed with ET 20 yrs ago. I have been on HU for about 10 years. Triple negative for mutations. On aspirin for about 15 years. My platelets run 2 million if I go off HU. When I take HU they run between 500,000-900,000. I take 1500 mg HU daily. If I increase the HU my wbc and other labs go too low. It is a difficult balance. I am supposed to have rotator cuff surgery but I am really nervous because I do not want to go off the aspirin. I am afraid of clots/thrombosis/stroke. Anyone have experience or advise ?

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3 replies
lynnevb | @lynnevb | Apr 28, 2023
In reply to @shenriq "Hi Lydia, Thank you for your response and personal statement about ET. I have no gene..." + (show)
@shenriq

Hi Lydia,
Thank you for your response and personal statement about ET. I have no gene mutations and am wrestling only with the elevated platelet issues. I am continuing to seek out information and like you, was encouraged to get a 2nd opinion by a friend and have been in contact with Sloan Kettering. I am not sure about the value of another opinion, because over the years, my numbers have been consistently elevated. It was important for me to hear from someone who has taken Hydrea, to hear about a personal experience, so thank you for that.
Would you be open to sharing what your side effects are/have been and, is it expected that you'll be taking Hydrea for life? Also, are there any limitations that you're aware of, while on this drug? I'm working to stay positive, but my diagnosis is new enough for me to still be rattled.
Thanks again for your kindness. Good luck to you, too!

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Hi Everyone, I have ET for 20yrs. On Hydrea and aspirin for 10 years. Triple negative for mutations. Side effects for Hydrea and asprin were gut issues. Heartburn and some mild esophagus and constipation. Now I drink 100 oz of water daily, take meds with food in the morning and went gluten and dairy free and am doing much better. I am 68 yo female and doing pretty well. Yes I do worry about thrombosis and stroke snd PE. But overall doing well.

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eileen11108 | @eileen11108 | Apr 29, 2023
In reply to @tokyolin "Marylynda, have you been tested for temporal arteritis? I had it about ten years ago,and presented..." + (show)
@tokyolin

Marylynda, have you been tested for temporal arteritis? I had it about ten years ago,and presented with some of the same symptoms you described.

I am 82 and was diagnosed with ET six months ago. At first, the oncologist put me on a low dose aspirin daily.
My platelet count was up to 609 so she put my hydroxyurea. 500 mg daily. I freaked out when I saw the label on the medicine bottle that said you had to wear plastic gloves when handling both the bottle and the medicine. Is this drug a form of chemotherapy? No real symptoms except fatigue and high platelet count.

Jump to this post

Yes, it is a chemo drug.

I never touch the capsule. I slide out a capsule onto another lid. You need to take with a full glass of water. I squish some of the water around my mouth first and then slide capsule into my mouth and drink the rest of the water.

To avoid the toxic effect you should drink minimum of 64 ounces of fluid daily.

Eileen

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1 reply
trustfaith4 | @trustfaith4 | Apr 29, 2023
In reply to @lynnevb "Hi, I am new to this support group. I am 68yo. Diagnosed with ET 20 yrs..." + (show)
@lynnevb

Hi, I am new to this support group. I am 68yo. Diagnosed with ET 20 yrs ago. I have been on HU for about 10 years. Triple negative for mutations. On aspirin for about 15 years. My platelets run 2 million if I go off HU. When I take HU they run between 500,000-900,000. I take 1500 mg HU daily. If I increase the HU my wbc and other labs go too low. It is a difficult balance. I am supposed to have rotator cuff surgery but I am really nervous because I do not want to go off the aspirin. I am afraid of clots/thrombosis/stroke. Anyone have experience or advise ?

Jump to this post

I would like to know if anyone lost hair when you started taking Hydrea?

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