Blood Cancers & Disorders Support Group

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Comment

asked the question about VEXAS, the medication is very expensive, “Jakafi”, how can I get assistance...

https://connect.mayoclinic.org/comment/936554/

Discussion: Has anyone heard of VEXAS syndrome?

Support Group: Blood Cancers & Disorders

Posted: Sep 26, 2023

Comment

I have been on Jakafi for several years now for skin GVHD. I have also experienced...

https://connect.mayoclinic.org/comment/1222720/

Discussion: Weight gain and high cholesterol with Jakafi

Support Group: Blood Cancers & Disorders

Posted: Jan 27, 2025

Comment

Dad tried anagrelide. It didn't work as well as HU and caused heart arrythmia. At that...

https://connect.mayoclinic.org/comment/1067052/

Discussion: 70 + year women with Thrombosis

Support Group: Blood Cancers & Disorders

Posted: May 13, 2024

Comment

That’s great news for you. We’re all different, and so are of course each of our...

https://connect.mayoclinic.org/comment/840938/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 10, 2023

Comment

I have only taken hydroxyurea and Jakafi. I was in a clinical study for a while...

https://connect.mayoclinic.org/comment/1368004/

Discussion: I would deeply appreciate feedback on patients diagnosed with CMML

Support Group: Blood Cancers & Disorders

Posted: Aug 10, 2025

Comment

Make sure you are taking a blood thinner I am on eliquis and it has helped...

https://connect.mayoclinic.org/comment/887733/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jun 30, 2023

Comment

@alive Would you mind telling me what drug was part of your clinical trial? I have...

https://connect.mayoclinic.org/comment/821215/

Discussion: Acute myeloid leukemia (AML): What can I expect?

Support Group: Blood Cancers & Disorders

Posted: Mar 5, 2023

Comment

Acupuncture def helps my lower back pain. Hasn’t done much for numb feet (side effect of...

https://connect.mayoclinic.org/comment/853552/

Discussion: Does Acupuncture help low back pain caused by multiple myeloma?

Support Group: Blood Cancers & Disorders

Posted: May 3, 2023

Comment

@steiner My skin cancer was basal cell and kept coming back because Jakafi encourages the cell...

https://connect.mayoclinic.org/comment/1432178/

Discussion: MDS-CMML-1: Anyone dealing with pruritus (itching)?

Support Group: Blood Cancers & Disorders

Posted: Nov 6, 2025

Comment

I’m on my second month of Jakafi. I’ve had no side effects and so far my...

https://connect.mayoclinic.org/comment/1200841/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Dec 31, 2024