Blood Cancers & Disorders Support Group

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Comments (328)

Most ET patients live a normal life span. My dad had it and lived to be...

https://connect.mayoclinic.org/comment/1525738/

Discussion: Newly Diagnosed Essential Thrombocytosis

Support Group: Blood Cancers & Disorders

Posted: Mar 13 7:05am

Welcome to Mayo Connect, @amterrazas1. Stereotactic body radiotherapy (SBRT) is a type of precisely focused radiation...

https://connect.mayoclinic.org/comment/1539487/

Discussion: Anyone with ET (JAK2+ or CALR) had SBRT (radiotherapy)?

Support Group: Blood Cancers & Disorders

Posted: Mar 31 10:05am

Hi Tessa! I was diagnosed with essential thrombocythemia in 2019 at the age of 64. My...

https://connect.mayoclinic.org/comment/1148876/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Sep 28, 2024

Just the hydroxy. i am still waiting to learn what the next step will be. My...

https://connect.mayoclinic.org/comment/791454/

Discussion: High Platelets

Support Group: Blood Cancers & Disorders

Posted: Jan 2, 2023

84 years old on Hydroxyurea 10 years for Essential Thrombocythemia. Numbers usually 600-700. On 28 pills...

https://connect.mayoclinic.org/comment/1370260/

Discussion: What are most common side effects when starting HU (Hydroxyurea)?

Support Group: Blood Cancers & Disorders

Posted: Aug 14, 2025

Hello - I have Essential Thrombocythemia but not diabetic. Have been treated with Hydroxyurea for sometime....

https://connect.mayoclinic.org/comment/1111717/

Discussion: Type 1 diabetes and essential thrombocythemia: Anyone have both?

Support Group: Blood Cancers & Disorders

Posted: Jul 25, 2024

I have Essential Thrombocythemia. Started with 3 pills weekly of hydroxyurea, and now at once a...

https://connect.mayoclinic.org/comment/997644/

Discussion: What are most common side effects when starting HU (Hydroxyurea)?

Support Group: Blood Cancers & Disorders

Posted: Jan 15, 2024

Hi @healedbytheblood0119, you're right to do your research about best treatments for essential thrombocythemia. Anagrelide and...

https://connect.mayoclinic.org/comment/1010081/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Feb 5, 2024

I also have ET. I need to find out if it is Essential Thrombocythemia or thrombocytosis?...

https://connect.mayoclinic.org/comment/805573/

Discussion: Essential Thrombocythemia (ET) and viruses

Support Group: Blood Cancers & Disorders

Posted: Feb 2, 2023

Hi @emma1971, Welcome to Connect. The medication you’re referring to, Ruxolitinib is actually a medication used...

https://connect.mayoclinic.org/comment/1293785/

Discussion: Started Hydroxyurea 5 weeks . How long does the fatigue last?

Support Group: Blood Cancers & Disorders

Posted: Apr 30, 2025

Hi @shree, I know you are concerned that most of the discussions you’ve found on ET...

https://connect.mayoclinic.org/comment/1269512/

Discussion: Up to date info

Support Group: Blood Cancers & Disorders

Posted: Mar 29, 2025

Hi @sandy1959, while not specific to essential thrombocythemia and its treatments, I thought you might be...

https://connect.mayoclinic.org/comment/859808/

Discussion: Hair loss with ET and on hydroxyurea

Support Group: Blood Cancers & Disorders

Posted: May 14, 2023

Hi, I have had Essential Thrombocythemia for over 15 years. I was on Anagrelide, and this...

https://connect.mayoclinic.org/comment/1202567/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Jan 2, 2025

Good morning, @jose10. What a lovely thing to say!! This is one of those really ‘feel...

https://connect.mayoclinic.org/comment/1458352/

Discussion: Thanks: Just want to say thank you

Support Group: Blood Cancers & Disorders

Posted: Dec 11, 2025

Okay, so I have a diagnosis, but it really is not that clear. The pathology report...

https://connect.mayoclinic.org/comment/806600/

Discussion: Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia

Support Group: Blood Cancers & Disorders

Posted: Feb 5, 2023

Hi Victoria, I see that you haven't yet found answers regarding your bone pain. I merged...

https://connect.mayoclinic.org/comment/1142184/

Discussion: Does your oncologist acknowledge that ET may cause bone pain?

Support Group: Blood Cancers & Disorders

Posted: Sep 15, 2024

@cec2 This reply you wrote to @birgitr about your ET (essential thrombocythemia) experience is outstanding on...

https://connect.mayoclinic.org/comment/1494291/

Discussion: I have JAK2 ET and MPN: Anyone else have these symptoms?

Support Group: Blood Cancers & Disorders

Posted: Jan 30 1:28pm

Hi @sarahgault, Welcome to Connect. I’m glad your best friend found this forum for you! They’re...

https://connect.mayoclinic.org/comment/1551911/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Apr 16 10:09am

There was some regulatory update regarding treatment option I posted in another thread https://connect.mayoclinic.org/discussion/essential-thrombocythemia-treatment-with-besremi/?pg=10#comment-1660209. I am...

https://connect.mayoclinic.org/comment/1661495/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: 2 days ago

I've seen lots of comments here about itchy, dry skin, and unfortunately I experience it too....

https://connect.mayoclinic.org/comment/1203450/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Jan 4, 2025

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