Blood Cancers & Disorders Support Group | Page 13

I am now 65 and have been taking Hydroxyurea for 10 years to keep my platelets...

https://connect.mayoclinic.org/comment/910025/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Aug 9, 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

Hi Steve My case is similar to yours. I was treated with Hydroxyurea for7 yrs for...

https://connect.mayoclinic.org/comment/913626/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Aug 15, 2023

I think in the United States some insurance companies make you do step therapy…hydroxyurea first before...

https://connect.mayoclinic.org/comment/790422/

Discussion: New to Pegasys for ET - advice please!

Support Group: Blood Cancers & Disorders

Posted: Dec 30, 2022

@ettap , Great comment. Most importantly, because it pertains to me, as well!(!) Anyway, I have...

https://connect.mayoclinic.org/comment/652790/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Nov 10, 2021

@gajokos Sure. I’m working from memory, but I would say I had zero symptoms for about...

https://connect.mayoclinic.org/comment/1503326/

Discussion: Anyone have Myelofibrosis (CMS-HCC)?

Support Group: Blood Cancers & Disorders

Posted: Feb 11 2:59pm

@dax1million WOW ? 72 platelet infusion!! How low are his platelets? Mine were 94 last CBC...

https://connect.mayoclinic.org/comment/1412379/

Discussion: Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?

Support Group: Blood Cancers & Disorders

Posted: Oct 10, 2025

@toste I was also diagnosed with myelofibrosis and the JAK2 mutation about a year ago. I...

https://connect.mayoclinic.org/comment/1494172/

Discussion: I have JAK2 ET and MPN: Anyone else have these symptoms?

Support Group: Blood Cancers & Disorders

Posted: Jan 30 11:32am

Hi, I agree that the whole person approach is better. I finally have a decent primary...

https://connect.mayoclinic.org/comment/1275734/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Apr 6, 2025

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

Yes. I have Myelofibrosis “and” Erdheim Chester Disease, and the first sign - although no doctor...

https://connect.mayoclinic.org/comment/1511367/

Discussion: MDS-CMML-1: Anyone dealing with pruritus (itching)?

Support Group: Blood Cancers & Disorders

Posted: Feb 21 2:55pm

@artistsurvivor Hi Gail! While you’re waiting for @davi0937 to reply, I just wanted to welcome you...

https://connect.mayoclinic.org/comment/1579289/

Discussion: Are there support groups for Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: 1 day ago

I'm extremely grateful that they have a better diagnostic system now, and even more grateful that...

https://connect.mayoclinic.org/comment/892932/

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

Support Group: Blood Cancers & Disorders

Posted: Jul 9, 2023

My husband was diagnosed at 69, a year ago, with Primary Myelofibrosis including Jak2 mutation. A...

https://connect.mayoclinic.org/comment/693147/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Mar 26, 2022

Thank you, Lori, for your response and suggestions. It’s so gratifying and comforting to now be...

https://connect.mayoclinic.org/comment/1253226/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 8, 2025

Welcome to Connect, @tamijulien. At this time, a stem cell transplant remains the only possibility for...

https://connect.mayoclinic.org/comment/1103793/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 11, 2024

@davi0937 that is great you slipped into that trial just in time! I think hemoglobin affects...

https://connect.mayoclinic.org/comment/1414672/

Discussion: Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?

Support Group: Blood Cancers & Disorders

Posted: Oct 13, 2025

Hi withhope, I am very sorry you have had such a bad experience with all that....

https://connect.mayoclinic.org/comment/1305421/

Discussion: Getting nowhere with current Hematologist

Support Group: Blood Cancers & Disorders

Posted: May 16, 2025

Hi @marygantt, I totally relate to feeling confused by doctor’s recommendations! I was diagnosed with ET...

https://connect.mayoclinic.org/comment/1325811/

Discussion: I am looking for advice on lab work and how to address my Dr about it

Support Group: Blood Cancers & Disorders

Posted: Jun 12, 2025

@gajokos I’m bad with remembering dates and timelines, but yes, I probably joined this forum fairly...

https://connect.mayoclinic.org/comment/1503486/

Discussion: Anyone have Myelofibrosis (CMS-HCC)?

Support Group: Blood Cancers & Disorders

Posted: Feb 11 7:06pm