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Comments (550)

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

@janemc yes! And even when platelet counts are within normal limits, our bone marrow is still...

https://connect.mayoclinic.org/comment/1575754/

Discussion: Is anyone involved in clinical trials for ET, specifically for CALR?

Support Group: Blood Cancers & Disorders

Posted: May 16 8:29am

I was diagnosed with Myelofibrosis in Feb of this year; I have been taking Hydroxyurea from...

https://connect.mayoclinic.org/comment/1612492/

Discussion: Anyone else find the side effects of Hydrea 500MG frightening?

Support Group: Blood Cancers & Disorders

Posted: 8 hours ago

Does anyone with Myelofibrosis have high triglycerides and/or low HDL, despite being on a statin?

https://connect.mayoclinic.org/comment/1226243/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 31, 2025

Was informed today from Incyte that Jakafi is for all myelofibrosis patients, with and without JAK2...

https://connect.mayoclinic.org/comment/50503/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Dec 17, 2011

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

I am 75 and was diagnosed with Myelofibrosis Feb of this year: so far, the physical...

https://connect.mayoclinic.org/comment/1612480/

Discussion: With Myelofibrosis I have good days and bad days - is this normal?

Support Group: Blood Cancers & Disorders

Posted: 8 hours ago

My mom had myelofibrosis and lived with it for over 30 years. So it can be...

https://connect.mayoclinic.org/comment/893809/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 11, 2023

Welcome to Connect, @dax1million. Myelofibrosis is one of several conditions that is associated with MPNs…myeloproliferative neoplasms....

https://connect.mayoclinic.org/comment/1249272/

Discussion: How long before side effects from Hydrea start?

Support Group: Blood Cancers & Disorders

Posted: Mar 3, 2025

Thanks for the summary. Yes I have Primary Myelofibrosis. I was diagnosed a year ago.

https://connect.mayoclinic.org/comment/1322127/

Discussion: Any information on using CAR-T cell techniques to treat myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jun 7, 2025

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, 2025

@meredithes, I have added your discussion about primary autoimmune myelofibrosis to the Blood Cancers & Disorders...

https://connect.mayoclinic.org/comment/1523456/

Discussion: Anyone out there living with primary autoimmune myelofibrosis?

Support Group: Autoimmune Diseases

Posted: Mar 9 5:12pm

@tbrittingham68 Welcome to Mayo Clinic Connect. While you won’t be able to meet in person, you’ve...

https://connect.mayoclinic.org/comment/1431991/

Discussion: Are there support groups for Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Nov 6, 2025

Hi @winniegirl It sounds like your meeting with a myelofibrosis specialist was really beneficial for getting...

https://connect.mayoclinic.org/comment/1578121/

Discussion: Chronic Myeloid Leukemia now Myelofibrosis: Anyone had both?

Support Group: Blood Cancers & Disorders

Posted: May 19 8:33am

@jackiecarey Hello PV FRIEND!! I have dealt with this for almost 30 years ! Unfortunately now...

https://connect.mayoclinic.org/comment/1548811/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 12 1:06pm

Myelofibrosis JAK2 I’m currently on Jakafi and just completed cycle one of vidaza. White cells keep...

https://connect.mayoclinic.org/comment/813524/

Discussion: Massive spleen and dangerous low platelet count

Support Group: Blood Cancers & Disorders

Posted: Feb 18, 2023

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, 2025

I had horrible thorax itching years before being diagnosed with Myelofibrosis. No specialist could determine the...

https://connect.mayoclinic.org/comment/875274/

Discussion: I am curious: What symptoms did everyone have in the beginning for PV?

Support Group: Blood Cancers & Disorders

Posted: Jun 9, 2023

Hi @cindyem, I’m just double checking your reference to PMDS. Do you possibly mean myelofibrosis (MF)...

https://connect.mayoclinic.org/comment/1043541/

Discussion: Anyone have information about late stages of primary myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Apr 1, 2024

@tbrittingham68 we are here for you. Lori has information in her post above that connects you...

https://connect.mayoclinic.org/comment/1432339/

Discussion: Are there support groups for Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Nov 6, 2025

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