Blood Cancers & Disorders Support Group

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Comments (337)

Hello @sap21981 Welcome to Mayo Connect. I’m sure you’re in panic mode right now! Being a...

https://connect.mayoclinic.org/comment/886233/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jun 27, 2023

My hematologist wanted to keep my platelets low because of clotting events in the past. I...

https://connect.mayoclinic.org/comment/1313588/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: May 26, 2025

I lived a completely normal confident life before this. I was great. I definitely know that...

https://connect.mayoclinic.org/comment/858897/

Discussion: What might this be? polycythemia vera, PCOS, lupus, something else?

Support Group: Blood Cancers & Disorders

Posted: May 12, 2023

Hi @seamus1010 I found an article on Healthtap.com with the same question you have…Is it safe...

https://connect.mayoclinic.org/comment/825949/

Discussion: Is it safe to have a tattoo if you have Polycythemia Vera?

Support Group: Blood Cancers & Disorders

Posted: Mar 14, 2023

rmegg @rmegg while my first phlebotomy help; numbers were 300 down from 700, short time. I...

https://connect.mayoclinic.org/comment/816259/

Discussion: polycythemia vera: Rusfertide in stage 3 research: Any info?

Support Group: Blood Cancers & Disorders

Posted: Feb 23, 2023

1pearl, Having faith in your healthcare provider is a great comfort when navigating conditions. I was...

https://connect.mayoclinic.org/comment/1252950/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 8, 2025

trustfaith4, I am not an expert on ET but I have have experience with Polycythemia Vera...

https://connect.mayoclinic.org/comment/1167012/

Discussion: ET: What are acceptable platelet numbers?

Support Group: Blood Cancers & Disorders

Posted: Nov 3, 2024

Robyn Scherber, MD - Living with an MPN Sept. 12, 2019 - Polycythemia Vera Disease Progression...

https://connect.mayoclinic.org/comment/807931/

Discussion: Possible Polycythemia Tinnitus, Dizziness, Headache, Fatigue

Support Group: Blood Cancers & Disorders

Posted: Feb 7, 2023

@apr931 Hi there! I wanted to chime in on your question regarding the number 32. I...

https://connect.mayoclinic.org/comment/231785/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Feb 7, 2019

Hi Lisa. Hopefully you will get some definitive answers once you meet with your Hematologist in...

https://connect.mayoclinic.org/comment/1162384/

Discussion: JAK2 Mutation and enlarged spleen: What might it mean?

Support Group: Blood Cancers & Disorders

Posted: Oct 25, 2024

Hi. I also was diagnosed with polycythemia Vera JAK2. 2 years ago. I have never done...

https://connect.mayoclinic.org/comment/1013924/

Discussion: Polycythemia Vera and Nutritional Ketosis

Support Group: Blood Cancers & Disorders

Posted: Feb 11, 2024

First time joining a group here used mayo for research but now ...Im recently placed in...

https://connect.mayoclinic.org/comment/879738/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jun 16, 2023

Welcome to Connect, @wesm. Polycythemia Vera is a condition where your body is producing too many...

https://connect.mayoclinic.org/comment/1094588/

Discussion: I was diagnosed with Polycythemia vera last Sept. Is pain normal?

Support Group: Blood Cancers & Disorders

Posted: Jun 26, 2024

Hello @itsmepeggysue, welcome to Connect. It’s a mixed welcome because I’m happy you found us, though...

https://connect.mayoclinic.org/comment/840508/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 9, 2023

I don’t have EV, but I can give you first hand knowledge regarding hydroxyurea..I was diagnosed...

https://connect.mayoclinic.org/comment/784473/

Discussion: How did you make the final decision to begin HU protocol for ET?

Support Group: Blood Cancers & Disorders

Posted: Dec 13, 2022

Hello, my fellow veteran, I too was exposed to many dangerous chemicals, pollutants, and contaminants. I...

https://connect.mayoclinic.org/comment/1162660/

Discussion: Vietnam Vet and exposure to Benzene

Support Group: Blood Cancers & Disorders

Posted: Oct 25, 2024

hello, I have polycythemia Vera JAK2 positive..the JAK2 Positive version is a more severe form..I se...

https://connect.mayoclinic.org/comment/1401469/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 25, 2025

Hi @robinll. With PV (Polycytmenia Vera) it is generally the red blood count that is elevated,...

https://connect.mayoclinic.org/comment/1144372/

Discussion: What's the latest Jakafi (ruxolitinib) for polycythemia vera (PV)?

Support Group: Blood Cancers & Disorders

Posted: Sep 20, 2024

Hi @ettap, this post was years ago but curious how things are going now? If I'm...

https://connect.mayoclinic.org/comment/919567/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Aug 27, 2023

Hello @cgpak, I can understand your wanting to know about the experience of others with ET....

https://connect.mayoclinic.org/comment/337139/

Discussion: Spleen involvement in ET

Support Group: Blood Cancers & Disorders

Posted: Mar 16, 2021