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!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

nohrt4me | @nohrt4me | Oct 12, 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.

Jump to this post

My cardiologist nixed anagrelide because it causes fluid retention and abnormal rhythms in some people. My heart is already messed up, so not a good choice for me. But lots of people do very well on it.

REPLY
1 reply
nohrt4me | @nohrt4me | Oct 12, 2023
In reply to @mdterp76 "Get on the email list for the MPN Foundation and watch their excellent programs and videos...." + (show)
@mdterp76

Get on the email list for the MPN Foundation and watch their excellent programs and videos. https://www.mpnresearchfoundation.org/

I was just diagnosed in Feb 2023, take iron and baby aspirin daily, HU 2x week at 500 mg each, and just try to live my life. Yes, I do get fatigue from the HU, plus dry skin, and dry eyes, but I need to take the HU to remain stable and prevent thrombotic events. I'm a high-risk with ET, Jak2, and over 60. Have never had a symptom; just high platelets on a regular CBC at my physical in Jan. 2023. Keep active and busy. We can manage this for a long time with this illness. Take care!

Jump to this post

Do you think the fatigue comes from the HU or the ET or aging or co-morbidities? It's often really hard to figure out once you hit 60 or 70. I was exhausted all the time before HU and had to take early retirement. HU seemed to perk me up a bit.

REPLY
1995victoria | @1995victoria | Oct 12, 2023

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.

REPLY
1 reply
bj87 | @bj87 | Oct 12, 2023
In reply to @mdterp76 "Get on the email list for the MPN Foundation and watch their excellent programs and videos...." + (show)
@mdterp76

Get on the email list for the MPN Foundation and watch their excellent programs and videos. https://www.mpnresearchfoundation.org/

I was just diagnosed in Feb 2023, take iron and baby aspirin daily, HU 2x week at 500 mg each, and just try to live my life. Yes, I do get fatigue from the HU, plus dry skin, and dry eyes, but I need to take the HU to remain stable and prevent thrombotic events. I'm a high-risk with ET, Jak2, and over 60. Have never had a symptom; just high platelets on a regular CBC at my physical in Jan. 2023. Keep active and busy. We can manage this for a long time with this illness. Take care!

Jump to this post

I agree. Been doing it over 30 years.

REPLY
agfromtheuk | @agfromtheuk | Oct 12, 2023
In reply to @preacherswife1977 "I was recently diagnosed with Essential thrombocythemia. My platelet count was in the upper 700's. Hematologist..." + (show)
@preacherswife1977

I was recently diagnosed with Essential thrombocythemia. My platelet count was in the upper 700's. Hematologist called me on Friday night and I started Hydrea 500 mg on Saturday. I took it that Saturday through the following Sunday (9 doses). My platelet count was in the normal range. I asked if I could stop taking it because I was having so many side effects, they told me no. However, they did let me take it on MWF and that helped the side effects a lot. My next blood draw they were elevated (and I hate taking medicine). A week and 1/2 before my next blood draw I got some CBD gummies 25 mg Full Spectrum and at my next blood draw they were in the normal range. My question is will CBD help lower the platelets so I could stop taking the hydrea? I have some days I get so tired I can hardly go. This past Sunday was one of those days. I got home from church, put my pjs on and went to bed at 3pm and slept sound until 8:30am. I have never done that before. I don't know if it is the hydrea or the ET causing this.

This is all new to me, I have been in medical all my life but not hematology and oncology, Any advice will be greatly appreciated.

Jump to this post

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!!

REPLY
1 reply
docoltun | @docoltun | Oct 12, 2023
In reply to @nohrt4me "My cardiologist nixed anagrelide because it causes fluid retention and abnormal rhythms in some people. My..." + (show)
@nohrt4me

My cardiologist nixed anagrelide because it causes fluid retention and abnormal rhythms in some people. My heart is already messed up, so not a good choice for me. But lots of people do very well on it.

Jump to this post

Thank you so much. Makes sense!!

REPLY
kevinsgirl18 | @kevinsgirl18 | Oct 13, 2023
In reply to @kevinsgirl18 "I was just diagnosed with ET. I am researching, reading, learning, processing what exactly this means..." + (show)
@kevinsgirl18

I was just diagnosed with ET. I am researching, reading, learning, processing what exactly this means for my life and my loved ones.

Jump to this post

Thanks for all the hugs, everyone! Back at you! Tonight is the first night of my new medicine for ET. I am starting on Hydroxyurea 500 MG, 3 days a week. My doc then wants me to start with blood draw once a week for the first month. then every 3 months if all is well. I am having a hard time realizing this is ME we are talking about. I am the one with the unseen condition that starts with the Big C. Maybe I'm still numb, maybe it's no big deal, who knows? I don't like that there is nothing I can do to make it better besides take a pill.

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
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.

Jump to this post

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.

REPLY
1 reply
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.

Jump to this post

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

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.