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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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 10 5:25pm
In reply to @lynnevb "I have posted many times on this site. A shortened personal history. 21 years with ET..." + (show)
@lynnevb

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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@lynnevb, I'm no expert. But I search your question and found this:

- Hemostatic abnormalities in patients with Ehlers–Danlos syndrome https://onlinelibrary.wiley.com/doi/full/10.1111/jth.14310

Do you also have Ehlers-Danlos Syndrome?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 10 5:03pm
In reply to @bluehorse "79 CALR + for 3 months and improving with meds so far. Lab update today...Had not..." + (show)
@bluehorse

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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@bluehorse, it is so easy to ignore one's own health when in the intense phase of caring for someone close to you. How are you doing? What are next steps for you?

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1 reply
mikemp | @mikemp | Jul 10 1:39pm
In reply to @biddypoppop "I have been living with ET for over 10 years. Also taking hydroxyurea for most of..." + (show)
@biddypoppop

I have been living with ET for over 10 years. Also taking hydroxyurea for most of the time. I am alive and doing well.... grateful it was diagnosed and able to be treated. I am an 80 year old female.

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Good to know. I am 70 and just diagnosed with ET. Been on hydroxy for 6 weeks. Platelet count going down and little to no side effects.

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biddypoppop | @biddypoppop | Jul 9 6:32am

I have been living with ET for over 10 years. Also taking hydroxyurea for most of the time. I am alive and doing well.... grateful it was diagnosed and able to be treated. I am an 80 year old female.

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2 replies
claire39 | @claire39 | Jul 8 7:48am

Hi Shemriq…..
I have had ET for five years and have been on hydroxyuea for five years as well. There are side effects such as headaches, fatigue and itchiness, but for me it has kept my platelets under control. I do not fear any negative comments about hydroxyrea because without it I would not be here. Good luck on your journey. Claire

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nohrt4me | @nohrt4me | Jul 6 8:47am
In reply to @bluehorse "79 CALR + for 3 months and improving with meds so far. Lab update today...Had not..." + (show)
@bluehorse

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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I'm 70 and CALR+ x 15 yrs. Glad you found a good doc! My first hemo was unempathetic, said ET was symptomless, so if I was tired, it was age or menopause. BUT she was great at diagnostics and dosing. After she retired I got a young hemo. She started asking about fatigue levels and seems more clued into symptoms. So I feel that, between the two and a good PCP, I have recd good care.

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nohrt4me | @nohrt4me | Jul 6 8:39am
In reply to @lynnevb "I have posted many times on this site. A shortened personal history. 21 years with ET..." + (show)
@lynnevb

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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Would be interested. I have severe scoliosis. However, Dad also had ET, and no scoliosis or other ailments.

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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 .

REPLY
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.

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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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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.

REPLY
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