Blood Cancers & Disorders Support Group

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Comment

Hello, @lanaluka I’m really so sorry to hear you’re having issues with chronic GvHD. Very few...

https://connect.mayoclinic.org/comment/640514/

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

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

Posted: Sep 29, 2021

Comment

I had ET for over 17 years. I was diagnosed at age 45. After the first...

https://connect.mayoclinic.org/comment/957613/

Discussion: Anyone else find the side effects of Hydrea 500MG frightening?

Support Group: Blood Cancers & Disorders

Posted: Nov 1, 2023

Comment

Resveratrol, a substance manufactured from grapes, showed some effectiveness at reducing platelets, but research seems to...

https://connect.mayoclinic.org/comment/1318387/

Discussion: Getting nowhere with current Hematologist

Support Group: Blood Cancers & Disorders

Posted: Jun 2, 2025

Comment

Straight Medicare does not pay for Rx. Feds are trying to set caps on some common...

https://connect.mayoclinic.org/comment/1013591/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Feb 11, 2024

Comment

Hi @draney, not getting enough air can sure make a person feel panicky. You have Polycythemia...

https://connect.mayoclinic.org/comment/887453/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jun 29, 2023

Comment

My blood disorder was initially diagnosed as essential thrombocythemia but was later changed to myelofibrosis. My...

https://connect.mayoclinic.org/comment/1091333/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Jun 21, 2024

Comment

HU x 5+ years. No side effects to speak of. Less fatigue after I started it....

https://connect.mayoclinic.org/comment/940324/

Discussion: Anyone else find the side effects of Hydrea 500MG frightening?

Support Group: Blood Cancers & Disorders

Posted: Oct 2, 2023

Comment

I will hopefully begin a trial next week. I was diagnosed with ET (CALR) in 2018...

https://connect.mayoclinic.org/comment/1471224/

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

Support Group: Blood Cancers & Disorders

Posted: Dec 31, 2025

Comment

@rivieramaya2009 Hello I am glad you responded to my post , since I texted last ,...

https://connect.mayoclinic.org/comment/1419550/

Discussion: Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?

Support Group: Blood Cancers & Disorders

Posted: Oct 20, 2025

Comment

@rivieramaya2009 One of my very long time friends is named Susan ! Your grand daughters are...

https://connect.mayoclinic.org/comment/1420529/

Discussion: Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?

Support Group: Blood Cancers & Disorders

Posted: Oct 21, 2025