Blood Cancers & Disorders Support Group

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Comments (337)

Welcome to Connect, @eferret. Polycythemia vera is from a group of blood conditions called myeloproliferative neoplasms....

https://connect.mayoclinic.org/comment/1125122/

Discussion: How much of a risk factor is high white blood cell count with pv?

Support Group: Blood Cancers & Disorders

Posted: Aug 16, 2024

Welcome to Connect, @patpambern. Having itchy skin seems to be pretty common with Polycythemia Vera. There...

https://connect.mayoclinic.org/comment/1036922/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Mar 20, 2024

@pamdg, you may be interested in these related discussions: - What's the latest Jakafi (ruxolitinib) for...

https://connect.mayoclinic.org/comment/1444333/

Discussion: JAKAFI anyone! I've been on it for 5 years

Support Group: Blood Cancers & Disorders

Posted: Nov 21, 2025

I have PV and experienced hair loss when taking Hydroxyurea 7 days a week but it...

https://connect.mayoclinic.org/comment/1211910/

Discussion: Hair loss with ET and on hydroxyurea

Support Group: Blood Cancers & Disorders

Posted: Jan 15, 2025

Interesting, isn’t it? I never would have put together sleep apnea or lack of sleep together...

https://connect.mayoclinic.org/comment/781950/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Dec 7, 2022

New here. Being tested for primary vs secondary polycythemia Vera. Trying to stay away from Google...

https://connect.mayoclinic.org/comment/875474/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jun 9, 2023

Hi @favy2. It would be great for someone who needs therapeutic blood draws to be able...

https://connect.mayoclinic.org/comment/851324/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 29, 2023

Welcome to Connect @mahmoudbakry. Diagnosis blood conditions can get a little tricky. It’s often like trying...

https://connect.mayoclinic.org/comment/1022164/

Discussion: Polycythemia & Bone marrow Disorders screening

Support Group: Blood Cancers & Disorders

Posted: Feb 25, 2024

Lynnevb, I have been taking jakafi for almost two years with no side effects.I was diagnosed...

https://connect.mayoclinic.org/comment/1003544/

Discussion: ET management, Is anyone here taking Jakafi or Pegasus?

Support Group: Blood Cancers & Disorders

Posted: Jan 25, 2024

I’ve had Polycythemia Vera for 14 yrs, then RBC went up, I was prescribed taking 1000mg...

https://connect.mayoclinic.org/comment/1270863/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Mar 31, 2025

@colleenyoung thank you for this really helpful information. It does does sound like my doctor may...

https://connect.mayoclinic.org/comment/328622/

Discussion: Newly diagnosed with “Thick Blood”. Should I be concerned?

Support Group: Blood Cancers & Disorders

Posted: Nov 26, 2020

My wife was actually diagnosed with Polycythemia Vera in 1978. Back then it wasn’t known as...

https://connect.mayoclinic.org/comment/759857/

Discussion: Polycythemia: Are you asymptomatic?

Support Group: Blood Cancers & Disorders

Posted: Oct 11, 2022

Do you have Polycythemia Vera or Polycythemia? If it’s primary, PV I would stick with your...

https://connect.mayoclinic.org/comment/1061818/

Discussion: Erythrocytosis (Polycythemia): Do I need an oncologist?

Support Group: Blood Cancers & Disorders

Posted: May 4, 2024

I used to donate regularly for many many years before covid, then it started rising after...

https://connect.mayoclinic.org/comment/1038271/

Discussion: Does anyone have Hemocromatosis and??

Support Group: Blood Cancers & Disorders

Posted: Mar 22, 2024

@bobala, Many people have asked a similar question when diagnosied with one of the several types...

https://connect.mayoclinic.org/comment/1318106/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Jun 1, 2025

Hi @leann1 and welcome to Mayo Connect. We have several members who are curious about purchasing...

https://connect.mayoclinic.org/comment/878028/

Discussion: Diagnosed with PV: Anyone used a home hemoglobin testing kit?

Support Group: Blood Cancers & Disorders

Posted: Jun 13, 2023

Hello, new world. I am 47 and diagnosed yesterday with Polycythemia Vera. Headed to Mayo in...

https://connect.mayoclinic.org/comment/838030/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 5, 2023

I also have been diagnosed Nov. 25th with Polycythemia my doctor is highly confident that it...

https://connect.mayoclinic.org/comment/782658/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Dec 9, 2022

I know this is an old thread, but I saw the mention of Camp LeJeune. I...

https://connect.mayoclinic.org/comment/194352/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jan 20, 2020

Hi @cherren11. I’d like to welcome you to Mayo Connect though I’m certainly sorry to hear...

https://connect.mayoclinic.org/comment/1025672/

Discussion: Polycythemia & Bone marrow Disorders screening

Support Group: Blood Cancers & Disorders

Posted: Mar 1, 2024