Blood Cancers & Disorders Support Group

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Comments (2,270)

I have been on HU for ET for 11 years. I am 81 years old and...

https://connect.mayoclinic.org/comment/1376682/

Discussion: Essential thrombocythemia (ET): When to start hydroxyurea (HU)?

Support Group: Blood Cancers & Disorders

Posted: Aug 22, 2025

I also have ET-CALR. Occasional dizziness, scotoma (no headache) and other visual distortion, sleeplessness, abdominal discomfort,...

https://connect.mayoclinic.org/comment/758317/

Discussion: Anyone have CALR mutation with constitutional symptoms?

Support Group: Blood Cancers & Disorders

Posted: Oct 7, 2022

Welcome to Connect, @mib. It’s good that you found out early that you had ET prior...

https://connect.mayoclinic.org/comment/1035788/

Discussion: How fast do you start to feel hydroxyurea symptoms?

Support Group: Blood Cancers & Disorders

Posted: Mar 18, 2024

I am JAK2 positive with ET and my platelets are still in the millions. I started...

https://connect.mayoclinic.org/comment/846777/

Discussion: Jak 2 Positive with Elevated Platelets: What symptoms do you have?

Support Group: Blood Cancers & Disorders

Posted: Apr 21, 2023

I’m only 51 and I have been taking HU for Bout 3 years now and my...

https://connect.mayoclinic.org/comment/1244513/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Feb 24, 2025

I live in N Arizona and I just applied to be a patient at Mayo Clinic...

https://connect.mayoclinic.org/comment/1319702/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Jun 3, 2025

You didn't even know ET was possible until you were diagnosed, right? Among your acquaintances, you...

https://connect.mayoclinic.org/comment/1099782/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jul 5, 2024

My once straight hair has been getting noticeably curlier over the past two years though I...

https://connect.mayoclinic.org/comment/948416/

Discussion: Anyone else find the side effects of Hydrea 500MG frightening?

Support Group: Blood Cancers & Disorders

Posted: Oct 16, 2023

@ebertolis Hi Eva, Thank you for the information. I am 81. I have been taking Hydroxyurea...

https://connect.mayoclinic.org/comment/1513801/

Discussion: What vitamins to avoid when taking Hydrea (hydroxyurea) for ET JAK2?

Support Group: Blood Cancers & Disorders

Posted: Feb 24 4:41pm

@1pearl, I found another member diagnosed with MF with the CALR mutation and have put the...

https://connect.mayoclinic.org/comment/1256632/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 12, 2025

@zmg Yes! Rosacea upsets for me, too. I am 71 and on HU x 8 years....

https://connect.mayoclinic.org/comment/1512629/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Feb 23 8:32am

I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight...

https://connect.mayoclinic.org/comment/845004/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Apr 18, 2023

Hi.....my name is Claire and I also have ET. I have been taking Hydrea for almost...

https://connect.mayoclinic.org/comment/824418/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 11, 2023

I am 68, been on hydroxyurea for 4 years, ET CALR mutation. I was told that...

https://connect.mayoclinic.org/comment/774464/

Discussion: Essential thrombocytosis with MPL mutation

Support Group: Blood Cancers & Disorders

Posted: Nov 17, 2022

What dosage have you been prescibed? ET patients usually only need very low dosages of hydrea....

https://connect.mayoclinic.org/comment/1172215/

Discussion: How long before side effects from Hydrea start?

Support Group: Blood Cancers & Disorders

Posted: Nov 12, 2024

Hi @blkalydy973 Welcome back to Connect. We have a number of members in the forum who...

https://connect.mayoclinic.org/comment/917074/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Aug 22, 2023

et1055, we are all different. We all react differently to medications. Please, ask your hematologist this...

https://connect.mayoclinic.org/comment/1211072/

Discussion: Does ET or HU affect liver functions?

Support Group: Blood Cancers & Disorders

Posted: Jan 14, 2025

I was scared to death when I learned I had ET. Learning from this forum helped...

https://connect.mayoclinic.org/comment/1146470/

Discussion: Need help newly diagnosed with a high platelet count and the JAK2 gene

Support Group: Blood Cancers & Disorders

Posted: Sep 24, 2024

Since you mentioned ET and the VA in one sentence may I ask if you were...

https://connect.mayoclinic.org/comment/194347/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Oct 21, 2019

HU hasn't seemed to given me any problems unless it is sexual disfunction, although that could...

https://connect.mayoclinic.org/comment/1050025/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Apr 13, 2024