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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nohrt4me | @nohrt4me | Jun 19 7:15am
In reply to @sregiani "No travel problems here. We fly extensively every year, even since I was diagnosed, ET w/JAK2...." + (show)
@sregiani

No travel problems here. We fly extensively every year, even since I was diagnosed, ET w/JAK2.

From Michigan, I’ve flown all over the US, and to Alaska, Africa/Tanzania & Zanzibar, all over Europe (Poland, France, Italy, Spain, Portugal) - get the idea?

This fall we’re going to meetings in Wash DC, Vegas, then vacation in Italy and Slovenia.

What we have is an inconvenience. Always carry any meds and necessary supplements in a carry-on bag. Don’t let it stop you from living your life!

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I don't think anyone is telling people not to travel, just to take their meds and, if they're are over 60, have JAK2, and or a history of clots, to wear compression hose and stay hydrated.

Best wishes for your travels!

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1 reply
et1055 | @et1055 | Jun 19 10:17am
In reply to @nohrt4me "I don't think anyone is telling people not to travel, just to take their meds and,..." + (show)
@nohrt4me

I don't think anyone is telling people not to travel, just to take their meds and, if they're are over 60, have JAK2, and or a history of clots, to wear compression hose and stay hydrated.

Best wishes for your travels!

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That is very encouraging ❤️
Thank you

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docoltun | @docoltun | Jun 19 6:33pm
In reply to @et1055 "Another question… Have any of you with ET ever had any problems with flying? I have..." + (show)
@et1055

Another question… Have any of you with ET ever had any problems with flying? I have a trip booked for Europe.
now I’m a little nervous.🫤 With the new diagnosis.
The haematologist said to go for it and just take two aspirin instead of one.
I’ve decided this will be my last big trip😕 And even question if I should go on this one

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At 73, I've been traveling world wide since ET diagnosis some 20 years ago...I do wear compression stockings when flying long distances (anything over 2.5 hours). Stay hydrated, walk around. I'll be diving in Belize in August, then hope to hike with my daughter in Panama!

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jroyer | @jroyer | Jun 20 11:18am
In reply to @et1055 "My platelet counts have gone up over the last two years. It is presently at 1054...." + (show)
@et1055

My platelet counts have gone up over the last two years. It is presently at 1054. I went to one haematologist who told me it was because I had my spleen removed in 2014. (Ovarian cancer in 2008, recurrence in 2012, recurrence in 2014 – – in my spleen, so it was removed. I have been cancer free since.) He said because I am taking 81 mg ASA each day that it would stop my blood from clotting so don’t worry about it. My GP sent me for a second opinion. The second haematologist diagnosed me with ET and is putting me on Hydroxyurea.
Now I am very confused and concerned.
This is supposed to be a rare blood cancer?
Any insight and support would be greatly appreciated. Thank you.

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I've been flying frequently but trying to keep flight time under 5 hours (so connecting flights mostly). Told to get up and walk around as much as possible, stay hydrated, put meds in carry-on, compression socks (but I don't wear them--too confining). I am 72 yo. "YOLO" (you only live once -- so live your best life and try not to let this inconveinient disorder get in your way!). With Aloha, jd

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as86 | @as86 | Jul 4 9:21am

Hi- I've just been diagnosed with ET. I'm 60 years old, feel great and the journey started with a routine CBC. Not sure what I need right now other than a supportive community. Would love to hear from anyone who can offer that.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 4 1:29pm
In reply to @as86 "Hi- I've just been diagnosed with ET. I'm 60 years old, feel great and the journey..." + (show)
@as86

Hi- I've just been diagnosed with ET. I'm 60 years old, feel great and the journey started with a routine CBC. Not sure what I need right now other than a supportive community. Would love to hear from anyone who can offer that.

Jump to this post

Welcome, @as86. when getting a new diagnosis, it can be hard to even know what questions to ask. You've certainly come to the right place to find a supportive community. To get you started, I moved your post to thsi existing discussion:
- Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
I did this so you can read previous comments and connect with helpful and kind members like @nohrt4me @1995victoria @nyjean @preacherswife1977 to name just a few.

As you have more questions, you can use the group search to find more discussions related to ET : https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=Essential%20thrombocythemia&index=discussions

Have you been referred to a hematologist?

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1 reply
nohrt4me | @nohrt4me | Jul 5 9:11am

Not to be Nellie Negative, but ET is only an "inconvenience" if a) you are being treated and monitored by a competent hematologist, b) you follow advice and the treatment works without side effects, and c) you develop no co-morbidities.

Thrilled for those who feel great. But that isn't everyone's story, especially for those who have med side effects, more severe fatigue or frequent migraines, enlarged spleen, or co- morbidities. No one should feel they're a slacker if they need to slow down a bit.

I'm 70, CALR+ x 15 years, well-controlled on meds x 6 years. Looking at mitral valve repair, severe scoliosis. I feel pretty good, but I have to pace myself.

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1 reply
bluehorse | @bluehorse | Jul 5 12:26pm
In reply to @nohrt4me "Not to be Nellie Negative, but ET is only an "inconvenience" if a) you are being..." + (show)
@nohrt4me

Not to be Nellie Negative, but ET is only an "inconvenience" if a) you are being treated and monitored by a competent hematologist, b) you follow advice and the treatment works without side effects, and c) you develop no co-morbidities.

Thrilled for those who feel great. But that isn't everyone's story, especially for those who have med side effects, more severe fatigue or frequent migraines, enlarged spleen, or co- morbidities. No one should feel they're a slacker if they need to slow down a bit.

I'm 70, CALR+ x 15 years, well-controlled on meds x 6 years. Looking at mitral valve repair, severe scoliosis. I feel pretty good, but I have to pace myself.

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79 CALR + for 3 months and improving with meds so far. Lab update today...Had not had a CBC for more than 4 years...then this popped up with move and new PCP. I was shocked and very anxious , felt let down by my body. In retrospect can id subtle symptoms and a feeling something "had changed....something wrong" during extended intense stressful caregiving for my late husband. Adjusting to meds .....noting some intense fatigue at times, but relieved with rest. Learning that dosing and meds is more of an art and balancing act than just science. Feel lucky I have a PCP who knew to refer to specialist and getting a hematologist I feel I can trust.

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2 replies
janemc | @janemc | Jul 5 1:38pm
In reply to @as86 "Hi- I've just been diagnosed with ET. I'm 60 years old, feel great and the journey..." + (show)
@as86

Hi- I've just been diagnosed with ET. I'm 60 years old, feel great and the journey started with a routine CBC. Not sure what I need right now other than a supportive community. Would love to hear from anyone who can offer that.

Jump to this post

You didn't even know ET was possible until you were diagnosed, right? Among your acquaintances, you may not find anyone who's aware of this condition.

But here, you're among friends. Someone will weigh in on just about any question or concern you may have.

Ask away!

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lynnevb | @lynnevb | Jul 5 1:52pm
In reply to @colleenyoung "Welcome, @as86. when getting a new diagnosis, it can be hard to even know what questions..." + (show)
@colleenyoung

Welcome, @as86. when getting a new diagnosis, it can be hard to even know what questions to ask. You've certainly come to the right place to find a supportive community. To get you started, I moved your post to thsi existing discussion:
- Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
I did this so you can read previous comments and connect with helpful and kind members like @nohrt4me @1995victoria @nyjean @preacherswife1977 to name just a few.

As you have more questions, you can use the group search to find more discussions related to ET : https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=Essential%20thrombocythemia&index=discussions

Have you been referred to a hematologist?

Jump to this post

I have posted many times on this site. A shortened personal history. 21 years with ET (triple negative). On hydrea for 10 years (since age 60). Doing well so far. I am now posing a question to the community or the "connect director". I have read elsewhere that ET is more prevalent in people with Ehlers-Danlos Syndrome (loose joints and scoliosis among other telltale signs). Does anyone know any more about this? Just curious .

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