Blood Cancers & Disorders Support Group | Page 10

I can offer my experience/journey with PV so far… I’m female, 58 and was diagnosed in...

https://connect.mayoclinic.org/comment/1495485/

Discussion: 71 year old female diagnosed 6 month ago with PV

Support Group: Blood Cancers & Disorders

Posted: Feb 1 8:25am

Good morning, I wanted to share my positive experience with Besremi in case it is helpful...

https://connect.mayoclinic.org/comment/1378906/

Discussion: Essential Thrombocythemia treatment with Besremi

Support Group: Blood Cancers & Disorders

Posted: Aug 25, 2025

My Hematologist wants my HCT below 45, so I have started phlebotomy every month. Not fun....

https://connect.mayoclinic.org/comment/1369210/

Discussion: What hematocrit (HCT) targets indicate phlebotomy needed for PVC?

Support Group: Blood Cancers & Disorders

Posted: Aug 12, 2025

I have heard of shin pain from others in ET support groups. Seems to have been...

https://connect.mayoclinic.org/comment/1279993/

Discussion: Does your oncologist acknowledge that ET may cause bone pain?

Support Group: Blood Cancers & Disorders

Posted: Apr 12, 2025

A good question is: What symptoms might I have that I should call the office to...

https://connect.mayoclinic.org/comment/1272284/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Apr 2, 2025

The bone marrow biopsy is usually worse than it sounds. My doc gave me Xanax and...

https://connect.mayoclinic.org/comment/1359695/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Jul 30, 2025

A bone marrow biopsy is helpful because it will show the classic "elkhorn"-shaped platelets that indicate...

https://connect.mayoclinic.org/comment/1496968/

Discussion: Misdx with VWD at 14, in my late 20’s now looks like ET/or MPN. help?

Support Group: Blood Cancers & Disorders

Posted: Feb 3 7:14am

About sleep apnea, I (who have PV) did the full fledged test in the clinic overnight,...

https://connect.mayoclinic.org/comment/857067/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: May 9, 2023

Good points. My guess is that many patients reject chemo treatment for chronic cancers out of...

https://connect.mayoclinic.org/comment/1230606/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Feb 6, 2025

@leene808 gracias por tus hermosas palabras de aliento. Intento no pensar mucho en la enfermedad, pero...

https://connect.mayoclinic.org/comment/1414173/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 12, 2025

Update on my besremi journey. I started in June 2025 at 50mcg. Platelets around 1400. Excited...

https://connect.mayoclinic.org/comment/1462721/

Discussion: BESREMi anyone?

Support Group: Blood Cancers & Disorders

Posted: Dec 17, 2025

@birgitr You are absolutely right. I just wish I had been on this path earlier. Besremi...

https://connect.mayoclinic.org/comment/1583573/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: May 26 8:44am

I have had PV now for about a year. I am a 68 year old female....

https://connect.mayoclinic.org/comment/1603742/

Discussion: Hydroxyurea: what side effects were so bad you had to stop taking it?

Support Group: Blood Cancers & Disorders

Posted: Jun 22 10:38am

@nypara66 My hematologist is a young and very engaged man who I have great respect for...

https://connect.mayoclinic.org/comment/1422173/

Discussion: My mom has Polycythemia Vera: Can PV be managed without phlebotomies?

Support Group: Blood Cancers & Disorders

Posted: Oct 23, 2025

I have been taking Besremi for one year. I was hoping the side effects of dry...

https://connect.mayoclinic.org/comment/1511109/

Discussion: Essential Thrombocythemia treatment with Besremi

Support Group: Blood Cancers & Disorders

Posted: Feb 21 10:16am

@anavleek I have been taking HU for over 30 years and never had a problem. I...

https://connect.mayoclinic.org/comment/1411531/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 8, 2025

You can find a Travel Letter here: https://www.besremi.com/tools-and-resources/ that your doctor can complete, preferably as close...

https://connect.mayoclinic.org/comment/1329890/

Discussion: Essential Thrombocythemia treatment with Besremi

Support Group: Blood Cancers & Disorders

Posted: Jun 18, 2025

Tip to those taking dietary supplements for ET: Let your doc know what you are taking...

https://connect.mayoclinic.org/comment/1502514/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Feb 10 12:19pm

@cathy8 So far I was on HU for about 3 years before I had issues then...

https://connect.mayoclinic.org/comment/1483736/

Discussion: Is anyone involved in clinical trials for ET, specifically for CALR?

Support Group: Blood Cancers & Disorders

Posted: Jan 16 10:00am

I have the same thing, bone pain. That was one of my first symptoms to show...

https://connect.mayoclinic.org/comment/1388187/

Discussion: Does your oncologist acknowledge that ET may cause bone pain?

Support Group: Blood Cancers & Disorders

Posted: Sep 6, 2025