Blood Cancers & Disorders Support Group

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Comments (407)

Hi Dillydally, There are several discussions where members are talking about myelofibrosis and treatments. Here are...

https://connect.mayoclinic.org/comment/675825/

Discussion: Massive spleen and dangerous low platelet count

Support Group: Blood Cancers & Disorders

Posted: Jan 28, 2022

Hi Scott, while it's good to get a confirmed diagnosis, I'm sorry to hear that you...

https://connect.mayoclinic.org/comment/657819/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Nov 27, 2021

Welcome new members,@vas and @erincarrasco2024. As you may have learned as you start on this journey...

https://connect.mayoclinic.org/comment/1103054/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 10, 2024

Hello friends!! I have confirmed MYELOFIBROSIS! Just started taking OJJAARA ABOUT TEN DAYS AGO ! This...

https://connect.mayoclinic.org/comment/1411968/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 9 1:07pm

steve, this youtube video offers a good understanding of progression and treatment of myelofibrosis. It doesn't...

https://connect.mayoclinic.org/comment/132649/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 29, 2020

I'm 78 with Prefibrotic Myelofibrosis. My Hydrox regimen is 1,000 weekdays & 500 weekends.

https://connect.mayoclinic.org/comment/1403820/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 28 3:30pm

@mahmoudbakry, you might also be interested in this related discussion: - Primary Myelofibrosis: Continue watch &...

https://connect.mayoclinic.org/comment/1046374/

Discussion: Anyone with primary myelofibrosis, low risk, asymptomatic?

Support Group: Blood Cancers & Disorders

Posted: Apr 6, 2024

@ang3, I hope you saw the helpful posts from @cindyem and @hanya. You may also be...

https://connect.mayoclinic.org/comment/1261470/

Discussion: Myelofibrosis, Ojjaara and anemia

Support Group: Blood Cancers & Disorders

Posted: Mar 18 9:01pm

I had a lot of pain from Myelofibrosis. Once i was put on Ojjaara it all...

https://connect.mayoclinic.org/comment/1372580/

Discussion: Is anyone else suffering from bone pain due to multiple myeloma?

Support Group: Blood Cancers & Disorders

Posted: Aug 17 10:29am

Glad you popped over to this discussion group, Scott. I'm tagging fellow myelofibrosis members like @teriberi123...

https://connect.mayoclinic.org/comment/658685/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Nov 30, 2021

Welcome to Connect @chrisgray. You’re right, there is a lot to take in when you have...

https://connect.mayoclinic.org/comment/1227014/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Feb 1 1:23pm

You are not confused. I was diagnosed with Myelofibrosis in June 2025

https://connect.mayoclinic.org/comment/1349808/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 16 4:47pm

Hi my brother just diagnososed with myelofibrosis with CALR mutation. If any one of you have...

https://connect.mayoclinic.org/comment/50506/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Mar 4, 2017

@bunnygg, you may also be interested in these related discussion about myelofibrosis https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=Myelofibrosis&index=discussions Were you and...

https://connect.mayoclinic.org/comment/1087840/

Discussion: My mother diagnosed with Myelofibrosis: Episodes of abdominal pain

Support Group: Blood Cancers & Disorders

Posted: Jun 16, 2024

I see UVA Cancer Center also. I have prefibrotic myelofibrosis and they have a number of...

https://connect.mayoclinic.org/comment/1424471/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: 1 day ago

Hi @bmarkable. Myelofibrosis (MF) and Myelodyplastic syndrome are two different blood conditons. Myelofibrosis (MF) is disorder...

https://connect.mayoclinic.org/comment/1084232/

Discussion: Is Myelofibrosis (MF) the same as Myelodyplastic syndrome?

Support Group: Blood Cancers & Disorders

Posted: Jun 10, 2024

My husband has myelofibrosis anyone else have this disease?

https://connect.mayoclinic.org/comment/73345/

Discussion: Want to talk about Multiple Myeloma: Anyone else?

Support Group: Blood Cancers & Disorders

Posted: May 7, 2016

I was diagnosed with myelofibrosis about 4 1/2 years ago. I formerly was diagnosed with essential...

https://connect.mayoclinic.org/comment/132598/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 5, 2017

I have myelofibrosis and have been on 10 mg Jakafi for several years. I have found...

https://connect.mayoclinic.org/comment/1379270/

Discussion: Doe anyone with Myelofibrosis suffer musscle spasm?

Support Group: Blood Cancers & Disorders

Posted: Aug 25 5:30pm

Took Hydroxyurea for years to control platelet count. But ,is there a relationship between that drug...

https://connect.mayoclinic.org/comment/50505/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Jan 7, 2017