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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1995victoria | @1995victoria | Oct 17, 2023

I haven't had any symptoms from 3 years before being diagnosed and platelets rising, now 3 years after diagnosis, first year HU tried all variations, now on 2 caps plus baby aspirin daily. Don't have any symptoms, usual aging issues.

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tracey78 | @tracey78 | Oct 16, 2023

I have nothing to offer except I am with you as far as need and want to know. I’m going crazy and it’s awful not knowing

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1 reply
lynn22 | @lynn22 | Oct 16, 2023
In reply to @agfromtheuk "Restless Leg Syndrome...Ok, I am going to put this crazy solution out there, this is an..." + (show)
@agfromtheuk

Restless Leg Syndrome...Ok, I am going to put this crazy solution out there, this is an old wife's tale! don't ask me why, but sleeping with a bar of soap near your legs does actually work! Don't knock it until you have tried it!!

Jump to this post

I thought it was crazy when a friend told me it helps with leg cramps in bed which my partner suffers with. Put a bar under the mattress and no more legs cramps, who’d have thought it!

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1 reply
jroyer | @jroyer | Oct 15, 2023

I am 71 yo female diagnosed with ET in May this year. Started 500mg HU every other day to bring numbers down from 800s. July numbers went down, August went back up. So now HU every day and we will check again mid Nov. only side effects are hot flashes again (ugh-I thought I was done with that), and some times my shins will briefly feel sunburned — then it goes away.

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ldz | @ldz | Oct 14, 2023
In reply to @docoltun "Wish I could understand why more doctors don't recommend Anagrelide for ET....when a new physician switched..." + (show)
@docoltun

Wish I could understand why more doctors don't recommend Anagrelide for ET....when a new physician switched me to Hydrea it caused SO MANY side effects and never did stablize the platelet count. Grateful when I was able to find a physican who said if it worked (for 10 years) why switch?

I'm 72, diagnosed over twenty years ago.

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Thank you for the suggestion, I will discuss this with my dr this coming week.

Any side effects on Anagrelide?

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1 reply
1995victoria | @1995victoria | Oct 14, 2023
In reply to @nohrt4me "ET complicates things. I was always very high energy until I hit 55. Then the fatigue..." + (show)
@nohrt4me

ET complicates things. I was always very high energy until I hit 55. Then the fatigue was often crushing, and I didn't want to do anything. I hated to complain about it because you just get relegated to the postmenopausal nutcase group. But I was spacey, tired, irritable, and didn't want to socialize. When I was diagnosed, the hemo said onset of ET was ... age 55. I felt she knew what she was doing treatment-wise, but she maintained until her retirement that ET was a symptomless disease. So I still keep my trap shut about fatigue and visual problems down at the oncology clinic. My GP was more helpful about symptoms.

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I never had any symptoms except my hands would turn bright pink when I washed them......after HU no longer bright pink

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dkmitchell | @dkmitchell | Oct 14, 2023
In reply to @tokyolin "My Primary Care Physician also told me that ET is not "technically" cancer. My oncologist told..." + (show)
@tokyolin

My Primary Care Physician also told me that ET is not "technically" cancer. My oncologist told me that this cancer will not take me, but that I am at high risk for a stroke because of my age.
Yes, I agree that it's frustrating, but I take my HU 500 mg. every day and try to get on with my life. I find that exercise helps.

Linda

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Thank you for your reply. I take HU 500 mg. every day too. Thank you regarding exercise is helpful. I was told the same regarding a stroke. Knowing that this cancer will not take us is encouraging. My brother also has ET and we are in our early 70s.

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tokyolin | @tokyolin | Oct 14, 2023
In reply to @dkmitchell "My hematologist at University of Chicago Medicine also told me numerous times that essential thrombocytosis is..." + (show)
@dkmitchell

My hematologist at University of Chicago Medicine also told me numerous times that essential thrombocytosis is not cancer. However, online research does not support that claim the majority of the time.

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My Primary Care Physician also told me that ET is not "technically" cancer. My oncologist told me that this cancer will not take me, but that I am at high risk for a stroke because of my age.
Yes, I agree that it's frustrating, but I take my HU 500 mg. every day and try to get on with my life. I find that exercise helps.

Linda

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1 reply
dkmitchell | @dkmitchell | Oct 13, 2023
In reply to @jacquelineh "Thank you Lori. I’m in NZ and my specialists are insistent that this is not cancer...." + (show)
@jacquelineh

Thank you Lori. I’m in NZ and my specialists are insistent that this is not cancer. When I pressed it, the answer was that it could be described as “pre-cancerous perhaps, but not cancer”. I’ve found this confusing due to many articles I’ve read.
I think for me, the word cancer is such a ‘big’ word that it feels important to define it fully in relation to my condition. But perhaps different countries and specialists have varying interpretations and understandings, so I will have to live in the ‘in-between’ lol.

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My hematologist at University of Chicago Medicine also told me numerous times that essential thrombocytosis is not cancer. However, online research does not support that claim the majority of the time.

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1 reply
nohrt4me | @nohrt4me | Oct 13, 2023
In reply to @1995victoria "I've been low energy most of my life. I don't know if ET or HU really..." + (show)
@1995victoria

I've been low energy most of my life. I don't know if ET or HU really changed it, or pandemic isolation?????? or just aging also.....seems like combination of many factors, I'm not sure I can point to just one and say that's it.

Jump to this post

ET complicates things. I was always very high energy until I hit 55. Then the fatigue was often crushing, and I didn't want to do anything. I hated to complain about it because you just get relegated to the postmenopausal nutcase group. But I was spacey, tired, irritable, and didn't want to socialize. When I was diagnosed, the hemo said onset of ET was ... age 55. I felt she knew what she was doing treatment-wise, but she maintained until her retirement that ET was a symptomless disease. So I still keep my trap shut about fatigue and visual problems down at the oncology clinic. My GP was more helpful about symptoms.

REPLY
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