Blood Cancers & Disorders Support Group

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Comments (445)

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

Three months after starting HU I developed a very itchy rash and had a fever of...

https://connect.mayoclinic.org/comment/1035795/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 18, 2024

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

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

@1hostahoney I have PV JAK2 positive and take Hydroxyurea also. My doctor wants to increase to...

https://connect.mayoclinic.org/comment/1563632/

Discussion: Polycythemia Vera and low iron

Support Group: Blood Cancers & Disorders

Posted: Apr 30 8:13pm

@loribmt, @patty1962 I am waiting for sponsor approval for either of these clinical trials at MD...

https://connect.mayoclinic.org/comment/1575765/

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

Support Group: Blood Cancers & Disorders

Posted: 2 days ago

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

@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

@carolgk Thank you, Carol. I'm doing much better with the Jakafi medication because my MF is...

https://connect.mayoclinic.org/comment/1538801/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 30 12:31pm

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

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

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

@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

I am sorry that you are not doing well . I have myelofibtosis and still on...

https://connect.mayoclinic.org/comment/1251826/

Discussion: Myelofibrosis, Ojjaara and anemia

Support Group: Blood Cancers & Disorders

Posted: Mar 6, 2025

Good morning. I’m 71. I was diagnosed with myelofibrosis a few years ago. Was asymptomatic at...

https://connect.mayoclinic.org/comment/1502910/

Discussion: Anyone have Myelofibrosis (CMS-HCC)?

Support Group: Blood Cancers & Disorders

Posted: Feb 11 6:10am

Hi @onthejoedock. Thought I’d take a moment to check in with you to see how your...

https://connect.mayoclinic.org/comment/1190947/

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

Support Group: Blood Cancers & Disorders

Posted: Dec 15, 2024

I took HU for 7 years. Never realized the side effects that were associated with that...

https://connect.mayoclinic.org/comment/1312590/

Discussion: Developed Rash on Hydroxyurea (HU)

Support Group: Blood Cancers & Disorders

Posted: May 25, 2025

Hi @nisi Welcome to Mayo Connect. I’m so sorry to see that there’s been a change...

https://connect.mayoclinic.org/comment/1523951/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 10 11:45am

I’ve had the same reaction to PV - am on Jakafi 20 mg 2x/day. It gets...

https://connect.mayoclinic.org/comment/869644/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: May 31, 2023

Thanks for reply. I, too, am on Jakafi and have been treated for condition for about...

https://connect.mayoclinic.org/comment/132600/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 5, 2017

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