Blood Cancers & Disorders Support Group

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Comments (2,270)

Second opinion can be helpful as long as it's with a doc who has more experience...

https://connect.mayoclinic.org/comment/1199246/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Dec 29, 2024

@mmkennedy Thanks for sharing your story. I too am ET triple negative. I have had this...

https://connect.mayoclinic.org/comment/1535074/

Discussion: ET: untreated elevated platelets for over 13 years

Support Group: Blood Cancers & Disorders

Posted: Mar 25 11:13am

@gigi05 My oncologist/hemo also told me it is not hereditary and I was not born with...

https://connect.mayoclinic.org/comment/1412080/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Oct 9, 2025

Resveratrol was being studied as a treatment for ET until the JAK inhibitors like Jakafi were...

https://connect.mayoclinic.org/comment/868606/

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

Support Group: Blood Cancers & Disorders

Posted: May 29, 2023

PS, GoodRx can give you an idea of what you'd pay for Pegasys in your area....

https://connect.mayoclinic.org/comment/1296462/

Discussion: What’s the cost of Pegasys with good commercial insurance?

Support Group: Blood Cancers & Disorders

Posted: May 4, 2025

I would say yes although I don’t know and no doctor would confirm but that is...

https://connect.mayoclinic.org/comment/1009394/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Feb 4, 2024

A good question is: What symptoms might I have that I should call the office to...

https://connect.mayoclinic.org/comment/1272284/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Apr 2, 2025

So question. Just for reference, I’m ET with jak2. My platelets are currently in the mid...

https://connect.mayoclinic.org/comment/1540957/

Discussion: Essential Thrombocytosis General Questions

Support Group: Blood Cancers & Disorders

Posted: Apr 2 8:21am

I have been taking .Hydrea for 4 years, for ET. My Hematologist said to take them...

https://connect.mayoclinic.org/comment/846632/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Apr 21, 2023

Well, when untreated, ET can progress to leukemia. That's why it's so important to protect our...

https://connect.mayoclinic.org/comment/1279611/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 11, 2025

I started Hydrea April 1 this year. I take 500 mg in the morning and another...

https://connect.mayoclinic.org/comment/1557507/

Discussion: Side effects of hydroxyurea

Support Group: Blood Cancers & Disorders

Posted: 4 days ago

I agree about lack of empathy. My sister doesn't seem to understand about how this could...

https://connect.mayoclinic.org/comment/1050953/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Apr 15, 2024

Could be from ET. I had the numbness symptom before diagnosis. Unfortunately it is neuropathy and...

https://connect.mayoclinic.org/comment/1361360/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Aug 1, 2025

Hi I was Diagnosed with ET 14months ago with the CALR gene mutation I'm on 1000mg...

https://connect.mayoclinic.org/comment/1270211/

Discussion: Anyone have CALR mutation with constitutional symptoms?

Support Group: Blood Cancers & Disorders

Posted: Mar 30, 2025

"Not getting our HU won't kill us, but for many Americans needing medications, this nonsense will...

https://connect.mayoclinic.org/comment/1285155/

Discussion: Are Hydroxyurea ingredients coming from China?

Support Group: Blood Cancers & Disorders

Posted: Apr 19, 2025

@kik1 Yes making treatment decisions with ET is a challenge- we don’t have a lot of...

https://connect.mayoclinic.org/comment/1478421/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Jan 9 6:12pm

@preacherswife1977 I have neuropathy in my feet and hands, possibly due to being diabetic as well...

https://connect.mayoclinic.org/comment/1545162/

Discussion: Is it okay to take B12 with essential thrombocythemia (ET)?

Support Group: Blood Cancers & Disorders

Posted: Apr 7 6:26pm

Hi @tracey78 Welcome to Connect. I’m happy you joined the forum where you’ll find a huge...

https://connect.mayoclinic.org/comment/949236/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Oct 17, 2023

Late to this thread, but I have ET, a chronic blood cancer, and so many of...

https://connect.mayoclinic.org/comment/693592/

Discussion: Stress Management for Cancer: Free online course from Mayo

Support Group: Cancer: Managing Symptoms

Posted: Mar 27, 2022

I've heard good things about Lahey Clinic and also Dana Farber. Sorry for your husband's issues....

https://connect.mayoclinic.org/comment/1136470/

Discussion: Finding a specialist for Essential Thrombocythemia

Support Group: Blood Cancers & Disorders

Posted: Sep 5, 2024