Blood Cancers & Disorders Support Group

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Comments (1,382)

@loribmt That was great advice. I hope everyone with the JAK2 mutation reads it twice. As...

https://connect.mayoclinic.org/comment/1442435/

Discussion: Jak2 mutations w/high WBC

Support Group: Blood Cancers & Disorders

Posted: Nov 19, 2025

@davi0937 My spleen and liver have advance swelling before I started the Jakafi, as well as...

https://connect.mayoclinic.org/comment/1501769/

Discussion: Anyone have Myelofibrosis (CMS-HCC)?

Support Group: Blood Cancers & Disorders

Posted: Feb 9 12:50pm

I am 72, had ET CALR x 17 years, 8 on HU. No life-altering issues from...

https://connect.mayoclinic.org/comment/1553399/

Discussion: Anyone diagnosed with Essential Thrombocythemia (ET) with CALR?

Support Group: Blood Cancers & Disorders

Posted: Apr 18 8:43am

My wife just tested positive for JAK2 on Dec 15th, after blood work on Dec 8th...

https://connect.mayoclinic.org/comment/994115/

Discussion: Essential Thrombocytosis: What amount of hydroxy do you take?

Support Group: Blood Cancers & Disorders

Posted: Jan 8, 2024

hello, I have polycythemia Vera JAK2 positive..the JAK2 Positive version is a more severe form..I se...

https://connect.mayoclinic.org/comment/1401469/

Discussion: Diagnosed with Polycythemia Vera in August. I was given Hdroxyurea

Support Group: Blood Cancers & Disorders

Posted: Sep 25, 2025

hey . i am abiha 18 years old diagnosed by ET with JAK2 mutation and have...

https://connect.mayoclinic.org/comment/758131/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Oct 6, 2022

Hello, I have been diagnosed with chronic anemia and polycythemia secondary. I’ve had elevated WBC, RBC,...

https://connect.mayoclinic.org/comment/740542/

Discussion: Is Idiopathic Erythrocytosis (Polycythemia) cancer?

Support Group: Blood Cancers & Disorders

Posted: Aug 22, 2022

Hello @kimmermat, welcome to Connect. You may notice I moved your discussion and combined it with...

https://connect.mayoclinic.org/comment/194327/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Aug 6, 2019

Hi @eloise999 , I think you are correct that bone marrow biopsy at diagnosis is best...

https://connect.mayoclinic.org/comment/1363930/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Aug 5, 2025

Hi, Lynnevb, I am curious as to why you went on hydrea after being on aspirin...

https://connect.mayoclinic.org/comment/1151729/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Oct 4, 2024

Hi Linda, I am 80 and have been dealing with ET JAK2 for over two years....

https://connect.mayoclinic.org/comment/1146959/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 25, 2024

Hello when I began taking 7X a week I had tooth pain and extreme sensitivity to...

https://connect.mayoclinic.org/comment/1081088/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 5, 2024

Hi @ettap, this post was years ago but curious how things are going now? If I'm...

https://connect.mayoclinic.org/comment/919567/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Aug 27, 2023

Hello @ettap and welcome to Connect. It is good to see that you have confirmed your...

https://connect.mayoclinic.org/comment/194256/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Mar 29, 2018

Aloha! I am 73. diagnosed with ET JAK2 about 3 years ago. elevated plates to 707....

https://connect.mayoclinic.org/comment/1552304/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Apr 16 6:29pm

I was diagnosed with myelofibrosis in 2014.comfirmed with a Jak2 DNA deviation test . Up until...

https://connect.mayoclinic.org/comment/1527906/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 15 11:35pm

Hi @taisaint, All of this information can be found in National Institute of Health, Pub Med...

https://connect.mayoclinic.org/comment/1023272/

Discussion: Contolling Hydroxyurea fatigue by time of day you take the medication

Support Group: Blood Cancers & Disorders

Posted: Feb 26, 2024

Welcome to Connect, Jean! As you’ve discovered, there are a number of members in the forum...

https://connect.mayoclinic.org/comment/1039680/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 24, 2024

@dragonflylynda Oh, i’m sorry, I must have mis-read a reply…nothing wrong with my brain! LOL Well,...

https://connect.mayoclinic.org/comment/1464788/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Dec 20, 2025

Good morning, @irishgoff82. It’s always so jarring when we get news about our health that we...

https://connect.mayoclinic.org/comment/1195805/

Discussion: What was your experience with bone marrow biopsy?

Support Group: Blood Cancers & Disorders

Posted: Dec 23, 2024