Blood Cancers & Disorders Support Group

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Comments (445)

Hi, @colran, Essential Thrombocythemia is a condition where your body is producing too many platelets. It’s...

https://connect.mayoclinic.org/comment/1523842/

Discussion: ET management, Is anyone here taking Jakafi or Pegasus?

Support Group: Blood Cancers & Disorders

Posted: Mar 10 9:57am

Amanda-I am 74 & was diagnosed with myelofibrosis in 2016. Just interested in overall discussions of...

https://connect.mayoclinic.org/comment/674388/

Discussion: Massive spleen and dangerous low platelet count

Support Group: Blood Cancers & Disorders

Posted: Jan 24, 2022

I can relate to blindsided, I was diagnose with Primary myleofibrousis (anemic) in July 2023. I...

https://connect.mayoclinic.org/comment/1275379/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Apr 6, 2025

Interesting, since that's exactly what happened after I started Jakafi. My platelets doubled in one week...

https://connect.mayoclinic.org/comment/1123781/

Discussion: What's the latest Jakafi (ruxolitinib) for polycythemia vera (PV)?

Support Group: Blood Cancers & Disorders

Posted: Aug 14, 2024

Glad things are going well for you. My Dr put me on Jakafi and I no...

https://connect.mayoclinic.org/comment/1368908/

Discussion: How bad is a diagnosis of Polycythemia Vera? What to expect?

Support Group: Blood Cancers & Disorders

Posted: Aug 12, 2025

Hello , I have been treated for PV/ JAK2 for four years . I was on...

https://connect.mayoclinic.org/comment/773685/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Nov 15, 2022

I have been on Jakafi over 4 years, it was the only thing that would slow...

https://connect.mayoclinic.org/comment/890182/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jul 4, 2023

@deb913 I’m 76 and have been on Jakafi for 1 year with no side effects. It...

https://connect.mayoclinic.org/comment/1443773/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Nov 21, 2025

@sme225 Thank you for telling me. What is Jakafi? I had thought previously to reading your...

https://connect.mayoclinic.org/comment/1432358/

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

Support Group: Blood Cancers & Disorders

Posted: Nov 6, 2025

Dépendant on your meds - example Jakafi : NO grapefruit in any kind of form. And...

https://connect.mayoclinic.org/comment/845486/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 19, 2023

Hello friends! I have been on JAKAFI for longer than a year I get terrible leg...

https://connect.mayoclinic.org/comment/1379113/

Discussion: Does anyone with Myelofibrosis suffer musscle spasm?

Support Group: Blood Cancers & Disorders

Posted: Aug 25, 2025

Hydroxyurea caused unusual tiredness and weakness. All I wanted to do was sleep or do nothing...

https://connect.mayoclinic.org/comment/1016782/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Feb 16, 2024

I have been on Jakafi for 3+ years. The leg/feet cramps started about 10 months ago....

https://connect.mayoclinic.org/comment/1484325/

Discussion: Does anyone with Myelofibrosis suffer musscle spasm?

Support Group: Blood Cancers & Disorders

Posted: Jan 16 10:35pm

And good luck to you, AngieP. Three days on from Acupuncture and I’m still doing well....

https://connect.mayoclinic.org/comment/855070/

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

Support Group: Blood Cancers & Disorders

Posted: May 5, 2023

@loribmt - @loribmt Thanks for this encouragement! I believe we are under great care provided by...

https://connect.mayoclinic.org/comment/1521631/

Discussion: This is new, overwhelming. Wife is diagnosed with PV, we need support

Support Group: Blood Cancers & Disorders

Posted: Mar 7 10:02am

I’m 76 and was diagnosed with PV/ Jak 2. 3 yrs ago .I have been on...

https://connect.mayoclinic.org/comment/1236551/

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

Support Group: Blood Cancers & Disorders

Posted: Feb 14, 2025

I don't know your weight, but it would make sense that you'd start with a minimal...

https://connect.mayoclinic.org/comment/1218283/

Discussion: What are most common side effects when starting HU (Hydroxyurea)?

Support Group: Blood Cancers & Disorders

Posted: Jan 21, 2025

I was diagnosed with ET in 1992. I was 46. It was found on a routine...

https://connect.mayoclinic.org/comment/1419750/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Oct 20, 2025

I too had hair loss on hydrea. Was switched to Jakafi after a few months and...

https://connect.mayoclinic.org/comment/889143/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jul 3, 2023

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

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