Blood Cancers & Disorders Support Group

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Comments (2,268)

Welcome to Connect @sherna09. Thank you for sharing your experience with ET and how you’ve been...

https://connect.mayoclinic.org/comment/896630/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jul 16, 2023

Hi Lynne, I am also triple negative ET. You’re the first person that I’ve “met” on...

https://connect.mayoclinic.org/comment/1246167/

Discussion: Like to know more. Just told I have Triple Negative MPN.

Support Group: Blood Cancers & Disorders

Posted: Feb 26, 2025

There's some research that indicates that the driver mutation can be detected years or even decades...

https://connect.mayoclinic.org/comment/893249/

Discussion: Essential Thrombocythemia (ET): foods, diet, nutrition?

Support Group: Blood Cancers & Disorders

Posted: Jul 10, 2023

@hipsu5 Congratulations on this wonderful news!!!! HU can upset our GI systems. As nohrt4me advises, drink...

https://connect.mayoclinic.org/comment/1531185/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Mar 20 8:12am

I looked it up. I definitely do not have ET. I have a hereditary disorder where...

https://connect.mayoclinic.org/comment/1051694/

Discussion: Started Hydroxyurea: How long to see decrease in counts?

Support Group: Blood Cancers & Disorders

Posted: Apr 16, 2024

what injection for which diagnosis? Been taking anagrelide with baby asprin for 20+ years to manage...

https://connect.mayoclinic.org/comment/1128160/

Discussion: ET and chemical pre-cautions?

Support Group: Blood Cancers & Disorders

Posted: Aug 21, 2024

@nancyra I have had ET x 17 yrs. My dad also had it, so I knew...

https://connect.mayoclinic.org/comment/1429862/

Discussion: Hydroxyurea vs Agrilyn: Anyone switched from HU to Agrilyn?

Support Group: Blood Cancers & Disorders

Posted: Nov 3, 2025

I'm nearly 70, but younger women have told me that platelets drop during pregnancy, and many...

https://connect.mayoclinic.org/comment/796159/

Discussion: How did you make the final decision to begin HU protocol for ET?

Support Group: Blood Cancers & Disorders

Posted: Jan 13, 2023

@loribmt, @mortysdad, @harley23, et al So grateful for this site and all the helpful info. And...

https://connect.mayoclinic.org/comment/875188/

Discussion: MGUS and restless leg syndrome

Support Group: Blood Cancers & Disorders

Posted: Jun 9, 2023

yes, thinning but I'm 80.....so I'm not surprised don't think it's HU or ET Luckily I...

https://connect.mayoclinic.org/comment/1262735/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Mar 20, 2025

Taking this to treat ET high platelets. Anyone have this medication cause problem with eyes? Red...

https://connect.mayoclinic.org/comment/146295/

Discussion: How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?

Support Group: Blood Cancers & Disorders

Posted: Feb 4, 2020

@nohrt4me Thank you for your reply. Taking to my Primary Care Dr. tomorrow. Had my 4...

https://connect.mayoclinic.org/comment/1520041/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Mar 5 7:41am

@nohrt4me I’ve Had ET two yrs Now On HU But Started Besremi two Wks Ago 50mg...

https://connect.mayoclinic.org/comment/1532502/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Mar 22 6:37am

Sorry, I am not aware of EPO. I was originally on Hydroxiria but developed so many...

https://connect.mayoclinic.org/comment/599508/

Discussion: JAK2 Mutation, Low Iron and High Platelet count

Support Group: Blood Cancers & Disorders

Posted: May 5, 2021

Hi @judgerg. You’re quite the inspiration for anyone newly diagnosed with ET and prescribed Hydroxyurea, such...

https://connect.mayoclinic.org/comment/1250905/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Mar 5, 2025

Your clot risk depends on age, mutation type, and previous clot history. At 68 with JAK2,...

https://connect.mayoclinic.org/comment/1192772/

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

Support Group: Blood Cancers & Disorders

Posted: Dec 18, 2024

It sounds like neuropathy in your feet but you need a neurologist to confirm it. I...

https://connect.mayoclinic.org/comment/1062974/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: May 6, 2024

I am so sorry for all you are going through, Rose. Hope someone with both ET...

https://connect.mayoclinic.org/comment/1117939/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Aug 4, 2024

Hi I was just diagnosed with ET my platelets are 477 and a hematologist put me...

https://connect.mayoclinic.org/comment/889183/

Discussion: Essential Thrombocythemia (ET): foods, diet, nutrition?

Support Group: Blood Cancers & Disorders

Posted: Jul 3, 2023

That is good to know. Thank you. I haven't had a stroke or heart attack but...

https://connect.mayoclinic.org/comment/837871/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Apr 5, 2023