Blood Cancers & Disorders Support Group

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Comments (505)

I have Myelofibrosis and I'm on Jakifi. I might have to have some surgery (waiting on...

https://connect.mayoclinic.org/comment/1554053/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Apr 19 6:11am

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

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

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

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

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

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

@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

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

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

@1995victoria I have a similar history but have been diagnosed with myelofibrosis. I will be undergoing...

https://connect.mayoclinic.org/comment/1518066/

Discussion: Jak2 positive, biopsy next: Does it mean I have blood cancer?

Support Group: Blood Cancers & Disorders

Posted: Mar 2 4:49pm

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

From @1pearl, I just came across my own post from last July, about nine months ago....

https://connect.mayoclinic.org/comment/1551122/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Apr 15 10:28am

@secglc2 Gwen, I just read your SCT story. Thank you for sharing it. I pray you...

https://connect.mayoclinic.org/comment/1543794/

Discussion: My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Support Group: Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Posted: Apr 6 7:42am

@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

Welcome to Connect, @godschild56. I encourage you to view this more recent discussion where you will...

https://connect.mayoclinic.org/comment/68481/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Feb 23, 2020

@1pearl I’m glad you are finding good care now for this disease. Really helps getting a...

https://connect.mayoclinic.org/comment/1537532/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 28 7:07pm

@diannerk MF is the abbreviation for Myelofibrosis. It is one of three diseases that are MPN’s...

https://connect.mayoclinic.org/comment/1441704/

Discussion: Essential thrombocythemia (ET): When to start hydroxyurea (HU)?

Support Group: Blood Cancers & Disorders

Posted: Nov 18, 2025