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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dee2000 | @dee2000 | Jan 27, 2023
In reply to @biyashiekh "hey . i am abiha 18 years old diagnosed by ET with JAK2 mutation and have..." + (show)
@biyashiekh

hey . i am abiha 18 years old diagnosed by ET with JAK2 mutation and have bud chiary syndrome. i have an enlarged liver and spleen. and went through a venoplasty but it only opened one my my three hepatic veins. well i am good now taking medicines and its been 5,6 months but now a days i feel strange and worried. i am here if any one with a similar situation share their experience and yeah for some moral support.

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Hi there I’m 25 and just been diagnosed with Crohns and ET I’m on meds for both it’s worring being so young.

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dee2000 | @dee2000 | Jan 27, 2023

I am 25 years old and have just been diagnosed with both ET and Crohn’s disease I wonder if the two are liked I am unable to take meds for ET because of the Crohns and have been told I need a bone marrow biopsy.

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1 reply
wiggins32 | @wiggins32 | Jan 27, 2023
In reply to @bj87 "Just got home from the doctors. My hct is still 27 which is as high as..." + (show)
@bj87

Just got home from the doctors. My hct is still 27 which is as high as it s ever been except when was 30 after 2units of red blood cells. Yay!!!
My wbc is 10.4, rbc is 2.99,
Hg is 8.8, platelets 23.8,
rdw15.5. I feel normal and strong and other than my kidneys being in stage 4 ,but stable , I feel great. I don’t seem to have any underlying problems as you. Yeah the fatigue is hard but that seems to be my only problem so I’m okay with that. Good luck with your journey

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Yay! That is super great news on your labs, and that you are feeling well. Oh what a great day it is. 🌞

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wiggins32 | @wiggins32 | Jan 27, 2023
In reply to @dee2000 "I am 25 years old and have just been diagnosed with both ET and Crohn’s disease..." + (show)
@dee2000

I am 25 years old and have just been diagnosed with both ET and Crohn’s disease I wonder if the two are liked I am unable to take meds for ET because of the Crohns and have been told I need a bone marrow biopsy.

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Hi Dee. I am hoping you have also posted in gastroenterology groups in this web site! Since you have Chrons, it seems both groups may be helpful. Hugs and blessings 🙌

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ttown | @ttown | Feb 1, 2023
In reply to @nohrt4me "I am really sorry you are having trouble with HU. Could you ask yr doc about..." + (show)
@nohrt4me

I am really sorry you are having trouble with HU. Could you ask yr doc about anagrelide? Or Pegasus?

Some people just can't take the HU.

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The good news....after being off the HU for 5 days and getting my mouth healed, my oncologist put me back on HU 4 days a week. I take it on Saturday, Sunday, Tuesday, and Thursday. Have been back on for a couple of months now and no more sores and my platelets are down in the mid 500s. I feel good and as long as this keeps my platelets down, I am good with taking the HU.

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1 reply
eileen11108 | @eileen11108 | Feb 1, 2023
In reply to @ttown "The good news....after being off the HU for 5 days and getting my mouth healed, my..." + (show)
@ttown

The good news....after being off the HU for 5 days and getting my mouth healed, my oncologist put me back on HU 4 days a week. I take it on Saturday, Sunday, Tuesday, and Thursday. Have been back on for a couple of months now and no more sores and my platelets are down in the mid 500s. I feel good and as long as this keeps my platelets down, I am good with taking the HU.

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Hi ttown,

I also want to suggest you rinse your lips and swirl water around your mouth before taking HU. Then take HU with full glass of water. This way your mouth is coated before taking. It is working for me.

Eileen

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raremiracle2 | @raremiracle2 | Feb 2, 2023

Posted by shenriq @shenriq they put me on 1000 mg hydroxyurea only BCB dropped small rate so put me so gave me hydroxyurea 1500 mg and again (lower little) Doctor will lower it mg hydroxyurea 1000 and then Phlebotomy (give little and take it away) I get heart burn with it. Some one said the heart burn isn't from you medication, it's because you have enlarge spleen and liver (it's all squashed and compacted) But I didn't have heart burn until medication hydroxyurea . Medication are pain and come with side- effects. ( Do's and Don't's - hope you find answers) (prayers) Medication are science experiences.

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1 reply
nohrt4me | @nohrt4me | Feb 3, 2023
In reply to @raremiracle2 "Posted by shenriq @shenriq they put me on 1000 mg hydroxyurea only BCB dropped small rate..." + (show)
@raremiracle2

Posted by shenriq @shenriq they put me on 1000 mg hydroxyurea only BCB dropped small rate so put me so gave me hydroxyurea 1500 mg and again (lower little) Doctor will lower it mg hydroxyurea 1000 and then Phlebotomy (give little and take it away) I get heart burn with it. Some one said the heart burn isn't from you medication, it's because you have enlarge spleen and liver (it's all squashed and compacted) But I didn't have heart burn until medication hydroxyurea . Medication are pain and come with side- effects. ( Do's and Don't's - hope you find answers) (prayers) Medication are science experiences.

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I have had a bit of trouble with heartburn since I started HU. I didn't link it with the meds, but maybe there is a connection. My spleen isn't enlarged, and I don't have abnormal LDH numbers, though. I wonder if the inflammation from the ET itself causes the acid reflux. At one of the MPN lectures a year ago, I learned that ET patients are more prone to gout. Doctors are still learning about this family of diseases ...

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raremiracle2 | @raremiracle2 | Feb 4, 2023

nohrt4me | @nohrt4me It feels good to talk to people going through the same thing. I started listening to youtube stories about different cancers, but it's missing that" real connection" . It's a mystery ride and it feels good that there is a group of people who are discovering and trying to uncover the unknown. What a ride we are going through! Thank you sharing your up's and down's, it helps. It sounds like HU has side effects but our disease have created new symptoms. How we deal with "total ray of management of mysteries, stress, symptoms and discovering the unknow is a path we are all taking together! Thank you for you courage and understanding! You are a blessing!

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cattl | @cattl | Feb 25, 2023

Hello all, my mom just got diagnosed ET, and I found this forum as I was researching online. She is 65 and the doctor put her on Hydrea 1000mg daily which helped lower her platelet count from 1,100,000 to about 300,000. Now she is on a lower dose 500mg daily. I saw several mentions on the forum that they had no side effects while taking Hydrea, but my mom’s hair is falling out and her nails turned black. I am wondering if anyone is going through the same. Best wishes to all.

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