Blood Cancers & Disorders Support Group

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Comments (284)

Hi @saucy, In this case PV is Polycythemia Vera. It’s A type of blood cancer where...

https://connect.mayoclinic.org/comment/818232/

Discussion: PV Itching Not After Bathing

Support Group: Blood Cancers & Disorders

Posted: Feb 27, 2023

There's a lot to take in! Our blood has four main components: White blood cells, red...

https://connect.mayoclinic.org/comment/1211059/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 14 7:17am

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

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

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 6:30am

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

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

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

@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

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

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

Regarding your feeling alone. in 2018 when I was inducted into the polycythemia vera club I...

https://connect.mayoclinic.org/comment/1219395/

Discussion: Any advice for taking Hydroxyurea when you're sick?

Support Group: Blood Cancers & Disorders

Posted: Jan 23 5:58am

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

My platelets bounce between 57 to 600 then back down to 80. I was on hydroxyurea...

https://connect.mayoclinic.org/comment/1083471/

Discussion: Which specific kind of doctor looks into thrombocytopenia?

Support Group: Blood Cancers & Disorders

Posted: Jun 9, 2024

Lori, thank you very much for your comments, which are most helpful. My CT Scan was...

https://connect.mayoclinic.org/comment/840197/

Discussion: Hematocrit Continues to Drop After Stopping Hydroxyurea

Support Group: Blood Cancers & Disorders

Posted: Apr 9, 2023

Welcome Linda. Here you can connect with others living with Polycythemia Vera like @chadknudson @hope19 @atir...

https://connect.mayoclinic.org/comment/647644/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Oct 23, 2021