Blood Cancers & Disorders Support Group

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Comments (462)

Hello, I have had PV with JAK2 for about 5 years. I work and live a...

https://connect.mayoclinic.org/comment/812063/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Feb 15, 2023

Just curious if your doc has suggested trying something other than hydroxyurea? Dad also had ET,...

https://connect.mayoclinic.org/comment/1030898/

Discussion: ET: What are acceptable platelet numbers?

Support Group: Blood Cancers & Disorders

Posted: Mar 10, 2024

Hi @gajokos There are different levels of risk categories for patients with ET (essential thrombocythemia). It’s...

https://connect.mayoclinic.org/comment/1494704/

Discussion: Are there support groups for Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 31 7:55am

I’m 76 years old and was diagnosed with polycythemia vera with Jack to in 2021. I...

https://connect.mayoclinic.org/comment/1401713/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 26, 2025

https://www.nccn.org/patients/guidelines/content/PDF/mpn-patient.pdf I think you will find this helpful. It will take a couple of readings before...

https://connect.mayoclinic.org/comment/1201894/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Jan 1, 2025

Interesting. I had a flare up of my gvhd spinal issues after my first Covid vax....

https://connect.mayoclinic.org/comment/634600/

Discussion: Chronic GVHD ~ Let’s talk about it!

Support Group: Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Posted: Sep 11, 2021

@joaniech2004 Hello MF FRIENDS ! At this point I have secondary HIGH RISK MF AFTER HAVING...

https://connect.mayoclinic.org/comment/1538861/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 30 1:25pm

@ 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'm new to this page and to the disease. I'm on 20 mg Jakafi though they...

https://connect.mayoclinic.org/comment/1226383/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 31, 2025

@davi0937 My spleen and liver have advance swelling before I started the Jakafi, as well as...

https://connect.mayoclinic.org/comment/1501769/

Discussion: Anyone have Myelofibrosis (CMS-HCC)?

Support Group: Blood Cancers & Disorders

Posted: Feb 9 12:50pm

@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 was on hydrea for a short time as I did not tolerate it well and...

https://connect.mayoclinic.org/comment/1011633/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Feb 8, 2024

No, they didn't have the same diagnostics then. Dad had ET for about 20 years (he...

https://connect.mayoclinic.org/comment/890886/

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

Support Group: Blood Cancers & Disorders

Posted: Jul 6, 2023

It’s unbelievably frustrating when our life takes such an abrupt turn for no reason…not that having...

https://connect.mayoclinic.org/comment/879788/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jun 16, 2023

How exciting to be tapering off! Enjoy your freedom and strong immune system! I was on...

https://connect.mayoclinic.org/comment/633130/

Discussion: Chronic GVHD ~ Let’s talk about it!

Support Group: Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Posted: Sep 6, 2021

@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

Phlebotomies did not bother me, but they had trouble getting a full pint, no matter how...

https://connect.mayoclinic.org/comment/1237521/

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

Support Group: Blood Cancers & Disorders

Posted: Feb 15, 2025

I've been on Jakafi since December 2022 and the only thing I experienced initially was an...

https://connect.mayoclinic.org/comment/908466/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Aug 6, 2023

I was exposed to Agent Orange in 1968-69, at the height of the Vietnam War. I...

https://connect.mayoclinic.org/comment/1434552/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Nov 9, 2025

JAK2+, diagnosed Feb 2024. Counts had been elevated for 3 years, then jumped at annual physical....

https://connect.mayoclinic.org/comment/1191756/

Discussion: How fast do you start to feel hydroxyurea symptoms?

Support Group: Blood Cancers & Disorders

Posted: Dec 16, 2024

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