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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kathy5brothers | @kathy5brothers | Sep 24, 2022

Hi my name is Cathy and I am 74 years old. I have thrombocytosis and have been on hydroxyurea for 20 years.
When my platelet count was almost 1 million, they started the med.

REPLY
1 reply
marylynda | @marylynda | Oct 3, 2021
In reply to @claire39 "Hello Marylynda...I too have ET and have fatigue. Like you, the fatigue used to be extreme..." + (show)
@claire39

Hello Marylynda...I too have ET and have fatigue. Like you, the fatigue used to be extreme but I have been on Hydrea for three years having it increased recently and slowly the fatigue lessened and my energy increased slightly. It takes time for the hydrea to catch up with the disease. My best advice is to do what you need to do in the morning and save the afternoon for resting.
I think we will always have fatigue so we have to really take care of yourselves. That is all I can say for now.....hope this helps....Claire

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Thank you

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claire39 | @claire39 | Oct 3, 2021
In reply to @marylynda "Does anyone have this? I have been having problems with total fatigue no matter how hard..." + (show)
@marylynda

Does anyone have this?
I have been having problems with total fatigue no matter how hard I try to do things I give out.
And my eye as well as right side of head

Jump to this post

Hello Marylynda...I too have ET and have fatigue. Like you, the fatigue used to be extreme but I have been on Hydrea for three years having it increased recently and slowly the fatigue lessened and my energy increased slightly. It takes time for the hydrea to catch up with the disease. My best advice is to do what you need to do in the morning and save the afternoon for resting.
I think we will always have fatigue so we have to really take care of yourselves. That is all I can say for now.....hope this helps....Claire

REPLY
1 reply
wa34937 | @wa34937 | Oct 2, 2021
In reply to @marylynda "Does anyone have this? I have been having problems with total fatigue no matter how hard..." + (show)
@marylynda

Does anyone have this?
I have been having problems with total fatigue no matter how hard I try to do things I give out.
And my eye as well as right side of head

Jump to this post

Two years on Hydroxy and my energy level is low though that may be due to other meds but my suspicion is Hyd, Hard to know if it's mid 70's age?

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marylynda | @marylynda | Oct 1, 2021

I have had ET for about 3 yrs . Had bone marrow biopsy cause platelets so high.
Et and pv both were mentioned in report.
I have been on Hydroxyurea since . Platelets back in range but didn't know if that could effect right side of head.

REPLY
marylynda | @marylynda | Oct 1, 2021
In reply to @colleenyoung "Hi MaryLynda, I moved your question to this exiting discussion about ET so you can connect..." + (show)
@colleenyoung

Hi MaryLynda, I moved your question to this exiting discussion about ET so you can connect with others who have essential Thrombocythemia like @shenriq @claire39 @lefsequeen @sstillwell @zeffirino @mpt77 and @huronshores.

MaryLynda, it looks like your message got cut off before you finished it. Can you explain more about what is happening with your eye and the right side of the head? When were you diagnosed with ET?

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Ache behind eye , temple and bone behind ear.
Had eye exam and dr could not see any reason behind eye to hurt.

Did blood work and it's ok just shows some inflammation in the sed.test

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 1, 2021
In reply to @marylynda "Does anyone have this? I have been having problems with total fatigue no matter how hard..." + (show)
@marylynda

Does anyone have this?
I have been having problems with total fatigue no matter how hard I try to do things I give out.
And my eye as well as right side of head

Jump to this post

Hi MaryLynda, I moved your question to this exiting discussion about ET so you can connect with others who have essential Thrombocythemia like @shenriq @claire39 @lefsequeen @sstillwell @zeffirino @mpt77 and @huronshores.

MaryLynda, it looks like your message got cut off before you finished it. Can you explain more about what is happening with your eye and the right side of the head? When were you diagnosed with ET?

REPLY
1 reply
marylynda | @marylynda | Oct 1, 2021

Does anyone have this?
I have been having problems with total fatigue no matter how hard I try to do things I give out.
And my eye as well as right side of head

REPLY
4 replies
susanellis | @susanellis | Jan 10, 2019
In reply to @shenriq "Susan, can you please clarify why your daughter was taken off Hydroxyurea and instead put on..." + (show)
@shenriq

Susan, can you please clarify why your daughter was taken off Hydroxyurea and instead put on Interferon? I've worked with 2 hemotologist-oncologists, who made the recommendation of taking Hydroxyurea. Not sure if your daughter wasn't responding to Hydroxyurea? Did she switch to Interferon because Hydroxyurea is a lifetime commitment and Interferon isn't? I would appreciate knowing, understanding that while both drugs directly affect platelets, the Hydroxyurea is known for being well-tolerated, unlike the Intefeuron.
Whatever your daughter's situation, I am hopeful that she can be managed for the long-term.

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Shenriq, I believe the main reason the hemotogist-oncologists changed to interferon was due to her age and remaining on hydroxyurea for the rest of her life. She did not experience any severe side effects from hydroxyurea but was going to need to double the amount because her platelets were not decreasing as fast as her doctors wanted. Today she will receive her third injection of interferon. The first injection caused flu like symptoms for about a day. No real side effects after the second injection. She should have blood work soon. She was also given the choice of just no medication and just checking blood work. She had no idea her platletes were so high until routine blood work - no real symptoms. Thanks for responding.

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shenriq | @shenriq | Jan 9, 2019
In reply to @susanellis "Thanks for sharing your experience. My daughter, 39 years old) with routine blood test was diagnosed..." + (show)
@susanellis

Thanks for sharing your experience. My daughter, 39 years old) with routine blood test was diagnosed with ET. Her platelets were over a million. She was started on a low dose of hydroxyurea (June 2018). After seeing a specialist, she changed to interferon ( just received her 2nd dose). The change was due to needing to be on hydroxyurea for the rest of her life and her platelets were down to around 800,000. I also wonder about diet. The first dr said it would not change things. The second dr encouraged a good diet and exercise. Wishing the best for you.

Jump to this post

Susan, can you please clarify why your daughter was taken off Hydroxyurea and instead put on Interferon? I've worked with 2 hemotologist-oncologists, who made the recommendation of taking Hydroxyurea. Not sure if your daughter wasn't responding to Hydroxyurea? Did she switch to Interferon because Hydroxyurea is a lifetime commitment and Interferon isn't? I would appreciate knowing, understanding that while both drugs directly affect platelets, the Hydroxyurea is known for being well-tolerated, unlike the Intefeuron.
Whatever your daughter's situation, I am hopeful that she can be managed for the long-term.

REPLY
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