Blood Cancers & Disorders Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

2,408 total results

Comments (2,270)

Covid vaccines do not raise your platelet levels. Having Covid can raise platelet levels temporarily while...

https://connect.mayoclinic.org/comment/1150691/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Oct 2, 2024

Good Morning Tessa. I set up a google alert for Essential Thrombocythemia because of the rarity...

https://connect.mayoclinic.org/comment/57922/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Nov 13, 2011

Hi, I'm 79 yr old female, on HU (500 mg daily) for a couple of years...

https://connect.mayoclinic.org/comment/1514200/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Feb 25 8:34am

You should consider having it evaluated by a neurologist. I have neuropathy in both feet and...

https://connect.mayoclinic.org/comment/880072/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 17, 2023

Hi, Eileen, since I, too, was diagnosed this summer with ET JAK2, I would be interested...

https://connect.mayoclinic.org/comment/772655/

Discussion: People living with ET and taking Hydrea: Anybody setting records?

Support Group: Blood Cancers & Disorders

Posted: Nov 13, 2022

@lynnebgraham Glad that went OK with anesthesia! Relief to have it over, eh? Keeping my fingers...

https://connect.mayoclinic.org/comment/1422483/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Oct 24, 2025

ET CALR+. Took me a year to get from 800 to 600 on 500mg HU every...

https://connect.mayoclinic.org/comment/1357353/

Discussion: What is the most effective way to take hydroxyurea?

Support Group: Blood Cancers & Disorders

Posted: Jul 27, 2025

I was diagnosed with ET jak2 mutation a yr ago june..My plts range between 450 and...

https://connect.mayoclinic.org/comment/1116872/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Aug 3, 2024

I am 68, female, have had CALR ET for 13 years, HU for 4. No problems...

https://connect.mayoclinic.org/comment/729961/

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

Support Group: Blood Cancers & Disorders

Posted: Jul 23, 2022

What does ET stand for? I was diagnosed 2 years ago with Polycythaemia Ruba Vera with...

https://connect.mayoclinic.org/comment/918920/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Aug 25, 2023

I've had ET Jak2 since 2020, with HU and baby aspirin. I know I'm not supposed...

https://connect.mayoclinic.org/comment/1446205/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Nov 24, 2025

An oncology nurse told me that blood withdrawn from people with blood disorders/cancers is discarded. And...

https://connect.mayoclinic.org/comment/981977/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Dec 17, 2023

Hmmm I am from Canada. The HU capsules I was given are bright pink and blue....

https://connect.mayoclinic.org/comment/1161210/

Discussion: HU & Titanium Oxide

Support Group: Blood Cancers & Disorders

Posted: Oct 22, 2024

I have PV and though its not ET is one of three myloproliferative neoplasms..I take a...

https://connect.mayoclinic.org/comment/1091667/

Discussion: Any correlation between Essential Thrombocythemia & high B12?

Support Group: Blood Cancers & Disorders

Posted: Jun 22, 2024

hi @kathy5brothers, I moved your question about fluctuating bloodwork although you've been on hydroxyurea for 20...

https://connect.mayoclinic.org/comment/759598/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 10, 2022

@janemc Thank you Frustration is key The fog is hard also. I’m a factual person and...

https://connect.mayoclinic.org/comment/1490615/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Jan 25 7:22pm

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

Just joining Mayo group. I've lived with ET for over two decades, given Anagrelide when it...

https://connect.mayoclinic.org/comment/898191/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jul 18, 2023

@tbrittingham68 I also was diagnosed with secondary MF in June2025. Had ET for 33 years with...

https://connect.mayoclinic.org/comment/1433777/

Discussion: Are there support groups for Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Nov 8, 2025

I and my wife (Becky) who was diagnosed with ET with Jak2 mutation this September (2024)....

https://connect.mayoclinic.org/comment/1186365/

Discussion: ET: What are acceptable platelet numbers?

Support Group: Blood Cancers & Disorders

Posted: Dec 7, 2024