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 | 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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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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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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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
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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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
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 .

Jump to this post

@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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bluehorse | @bluehorse | Jul 10 5:28pm
In reply to @colleenyoung "@bluehorse, it is so easy to ignore one's own health when in the intense phase of..." + (show)
@colleenyoung

@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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Thank you for your comment. I am doing ok....and I have decided recently to
get help from a therapist to deal with all the life changes . Sometimes I
think that I just stored all the stress and anxiety from that period of
time to deal with later....and then the ET dx on top of the losses,
moving and then this dx feels like too much. So the next steps are to seek
a therapist and continue with the healthy things I try to practice like
exercise , better diet and developing a support system in my new locale.
Sounds like you've "been there"....

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bosmac | @bosmac | Jul 10 10:15pm

Found this resource below that you may like to browse and see how they explain ET:

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Merle Richman | @wisner | Jul 11 11:00am
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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I was diagnosed with ET 2020 when I was 86 and have been on hydrox for about 4-years to keep platelets in near normal range. Now almost 91, I am also on 500mg Eliquis twice daily and recently stopped taking baby aspirin on advice of cardiologist and oncologist. I had been taking baby aspirin maybe 25 +|~ years! In general it now seems doctors more concerned with bleeding issues should I fall… than with how blood thinners such as baby aspirin will prevent stroke! This council to drop baby aspirin comes at complete surprise after taking for at least 25 years. Anybody in same boat? Merle Richman

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