Blood Cancers & Disorders Support Group

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Comments (526)

@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

Thanks for catching that. Yes, I have primary myelofibrosis. I have an oncologist that is holding...

https://connect.mayoclinic.org/comment/1043713/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 1, 2024

Hi @trillium, while many patients with polycythemia vera (PV), essential thrombocythemia (ET) or myelofibrosis (MF) have...

https://connect.mayoclinic.org/comment/336437/

Discussion: JAK2 negative with high platelets

Support Group: Heart & Blood Health

Posted: Mar 2, 2021

Do you really read and understand this diagnosis? I leave that to my doctor and don’t...

https://connect.mayoclinic.org/comment/1579687/

Discussion: Is it Waldenstrom Macroglobulinemia?

Support Group: Blood Cancers & Disorders

Posted: 12 hours ago

Thanks for reply. I, too, am on Jakafi and have been treated for condition for about...

https://connect.mayoclinic.org/comment/132600/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 5, 2017

Hello, @lmkmom I’ve been reading through a couple of your previous posts to see that you’ve...

https://connect.mayoclinic.org/comment/1320465/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 4, 2025

Welcome to Connect, @sunbird09 Over time, some people with PV may develop MF. This occurs if...

https://connect.mayoclinic.org/comment/1099168/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 4, 2024

@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

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: Oct 27, 2025

I am new to this site and having some difficulty following threads, but my husband was...

https://connect.mayoclinic.org/comment/1243859/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Feb 23, 2025

Bad news last time at the doc office, the doctor told me that I suffer from...

https://connect.mayoclinic.org/comment/1044397/

Discussion: Polycythemia & Bone marrow Disorders screening

Support Group: Blood Cancers & Disorders

Posted: Apr 2, 2024

@ tinak123 I am 70 YO, and was diagnosed with ET when I was 50. I...

https://connect.mayoclinic.org/comment/1399081/

Discussion: Living with ET

Support Group: Blood Cancers & Disorders

Posted: Sep 22, 2025

I would recommend anyone on hydroxyurea to look into Besremi. It has been shown to significantly...

https://connect.mayoclinic.org/comment/1204661/

Discussion: What are most common side effects when starting HU (Hydroxyurea)?

Support Group: Blood Cancers & Disorders

Posted: Jan 5, 2025

I get bulletins from Patient Power about drug therapies, and am bookmarking this one that lays...

https://connect.mayoclinic.org/comment/1329826/

Discussion: Starting 17th year with ET. What's ahead?

Support Group: Blood Cancers & Disorders

Posted: Jun 18, 2025

I have the typical high and low blood count concerns that most myelofibrosis patients deal with,...

https://connect.mayoclinic.org/comment/1426293/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 29, 2025

Sounds exactly like my story without the myelofibrosis. So many results from genetic and bone marrow...

https://connect.mayoclinic.org/comment/1203190/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Jan 3, 2025

My husband has just been diagnosed with Secondary Myelofibrosis. Previously he had Polycaethaemia Vera for 4...

https://connect.mayoclinic.org/comment/1523543/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 9 8:42pm

@janemc I’m not convinced by that argument, as Essential thrombocythemia (ET) is not contagious and cannot...

https://connect.mayoclinic.org/comment/1564791/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: May 2 10:43am

Hi @pearly, Please note that the reply above was from @gael, who is also living with...

https://connect.mayoclinic.org/comment/50536/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Jun 13, 2017

Jakafi is not chemo medicine as such. It is treatment targeted for PV and myelofibrosis; it...

https://connect.mayoclinic.org/comment/889987/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jul 4, 2023

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