Blood Cancers & Disorders Support Group

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Comments (444)

Hi Tim, I was diagnosed with myelofibrosis (JAK-2) in October 2025. Currently waiting for a second...

https://connect.mayoclinic.org/comment/1501187/

Discussion: Anyone have Myelofibrosis (CMS-HCC)?

Support Group: Blood Cancers & Disorders

Posted: Feb 8 5:43pm

Yes I got a itchy rash on my ankles. Also ran a high fever. Doctor had...

https://connect.mayoclinic.org/comment/1350996/

Discussion: Developed Rash on Hydroxyurea (HU)

Support Group: Blood Cancers & Disorders

Posted: Jul 18, 2025

Yes ! I have been diagnosed with MF , taking JAKAFI my lipid levels skyrocketed Low...

https://connect.mayoclinic.org/comment/1251867/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 6, 2025

Our first experience with Jakafi was 3 years ago, my mom has ET (Jak2) her journey...

https://connect.mayoclinic.org/comment/1299993/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: May 8, 2025

I cannot find anywhere that Jakafi has that ability. The friends I have shared it with...

https://connect.mayoclinic.org/comment/1552787/

Discussion: Has anyone had the Jakifi box test? My Blood % is 0!

Support Group: Blood Cancers & Disorders

Posted: Apr 17 11:18am

@lynnevb and everyone, you may also be interested in these existing related discussions: - New to...

https://connect.mayoclinic.org/comment/1009560/

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

Support Group: Blood Cancers & Disorders

Posted: Feb 4, 2024

Hi again! If you read other comments about help with itching/burning , patients are taking JAKAFI...

https://connect.mayoclinic.org/comment/1363700/

Discussion: Severe itching with PV

Support Group: Blood Cancers & Disorders

Posted: Aug 4, 2025

My husband also takes jakafi for his GVHD and is weaning off now but didn’t have...

https://connect.mayoclinic.org/comment/908873/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Aug 7, 2023

Lynnevb, I have been taking jakafi for almost two years with no side effects.I was diagnosed...

https://connect.mayoclinic.org/comment/1003544/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 25, 2024

I take jakafi to keep my blood under control I never have to take blood transfusion...

https://connect.mayoclinic.org/comment/887416/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jun 29, 2023

Hi, Aware of other treatments, but nothing other than Jakafi B.I.D.is now treatment of choice. Anemia...

https://connect.mayoclinic.org/comment/132604/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 7, 2017

I cannot find anywhere that Jakafi has that ability. The friends I have shared it with...

https://connect.mayoclinic.org/comment/1552723/

Discussion: Has anyone had the Jakifi box test? My Blood % is 0!

Support Group: Blood Cancers & Disorders

Posted: Apr 17 10:18am

My husband is at post-transplant day +148. He is still having to have magnesium and hydration...

https://connect.mayoclinic.org/comment/1215474/

Discussion: My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

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

Posted: Jan 18, 2025

Welcome to Connect @chrisgray. You’re right, there is a lot to take in when you have...

https://connect.mayoclinic.org/comment/1227014/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Feb 1, 2025

Sorry you have been diagnosed with this. I was in 2018, a few things that are...

https://connect.mayoclinic.org/comment/1553051/

Discussion: Anyone diagnosed with Essential Thrombocythemia (ET) with CALR?

Support Group: Blood Cancers & Disorders

Posted: Apr 17 6:16pm

No I am on the DISC-0974 trial. It mostly is targeting anemia, but in my case...

https://connect.mayoclinic.org/comment/1244709/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Feb 24, 2025

I took Jakafi, but for a different reason. I took it for Graft Versus Host Disease...

https://connect.mayoclinic.org/comment/995375/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Jan 11, 2024

I have myelofibrosis and have been on 10 mg Jakafi for several years. I have found...

https://connect.mayoclinic.org/comment/1379270/

Discussion: Does anyone with Myelofibrosis suffer musscle spasm?

Support Group: Blood Cancers & Disorders

Posted: Aug 25, 2025

Thank you for your reply! I have also been thinking of starting intermittent fasting. Will give...

https://connect.mayoclinic.org/comment/1222771/

Discussion: Weight gain and high cholesterol with Jakafi

Support Group: Blood Cancers & Disorders

Posted: Jan 27, 2025

I read a woman was on Jakafi for 20 years and proud to say she was...

https://connect.mayoclinic.org/comment/1089599/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Jun 19, 2024

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