Blood Cancers & Disorders Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

461 total results

Comments (436)

Was informed today from Incyte that Jakafi is for all myelofibrosis patients, with and without JAK2...

https://connect.mayoclinic.org/comment/50503/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Dec 17, 2011

I was on HU for several years slowly upping dose. Then became in tolerant and all...

https://connect.mayoclinic.org/comment/1273337/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Apr 3, 2025

Jakafi has helped me. I do have fatigue occasionally but not nearly as bad as before.

https://connect.mayoclinic.org/comment/729457/

Discussion: Jak2 and Vitamin D3

Support Group: Blood Cancers & Disorders

Posted: Jul 22, 2022

Hello I have PV Just over two years. I’m doing well so far on Hydroxyurea with...

https://connect.mayoclinic.org/comment/1236483/

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

Support Group: Blood Cancers & Disorders

Posted: Feb 14, 2025

Jakafi has been a game changer for me. Really helped with side effects of PV.

https://connect.mayoclinic.org/comment/1010006/

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

Support Group: Blood Cancers & Disorders

Posted: Feb 5, 2024

Jakafi is $1600 a month I have subsistence otherwise my medicare would not cover it

https://connect.mayoclinic.org/comment/896376/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jul 15, 2023

I am about to start the drug Jakafi. Has anyone taken it and what were the...

https://connect.mayoclinic.org/comment/1269462/

Discussion: MGUS and quite high Free Kappa Light Chain and Kappa Lambda Ratio

Support Group: Blood Cancers & Disorders

Posted: Mar 29, 2025

I started Jakafi about two weeks ago and so far so good. Medicare now as a...

https://connect.mayoclinic.org/comment/1011282/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Feb 7, 2024

Hi @pamdg, You’re wondering if Jakafi can cause irregular heartbeat. I’m looking at the Drugs.com website...

https://connect.mayoclinic.org/comment/699161/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Apr 14, 2022

I have Polycythemia Vera with Jak2 an 76 years old and diagnosed 3 yrs ago. My...

https://connect.mayoclinic.org/comment/1222785/

Discussion: Polycythemia Vera and low iron

Support Group: Blood Cancers & Disorders

Posted: Jan 27, 2025

I have PV and have burning in my feet and calves. I’m taking Jakafi and low...

https://connect.mayoclinic.org/comment/856373/

Discussion: I have JAK2 ET and MPN: Anyone else have these symptoms?

Support Group: Blood Cancers & Disorders

Posted: May 8, 2023

I had read in one article that Jakafi raises platelet levels which would increase clotting chances.

https://connect.mayoclinic.org/comment/751331/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 18, 2022

Hello, I heard the Jakafi is really expensive. I am happy that you are able to...

https://connect.mayoclinic.org/comment/1010332/

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

Support Group: Blood Cancers & Disorders

Posted: Feb 5, 2024

I have the very same side effects however I feel so much better then before Jakafi.

https://connect.mayoclinic.org/comment/914535/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Aug 17, 2023

@colran When I was originally diagnosed with ET in 2005 at the age of 50, I...

https://connect.mayoclinic.org/comment/1527344/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 15 9:58am

Just switched to Jakafi this past week. So far no improvement but I will give it...

https://connect.mayoclinic.org/comment/1279893/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Apr 12, 2025

Greetings, @papa6275 I have Polycythemia vera. After a couple of years, I no longer tolerated Hydroxyurea....

https://connect.mayoclinic.org/comment/914653/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Aug 17, 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

I hav never been told blood pressure medication makes Jakafi less effective. Did your doctor say...

https://connect.mayoclinic.org/comment/870450/

Discussion: Does Jardiance have serious interactions with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Jun 1, 2023

Myelofibrosis JAK2 I’m currently on Jakafi and just completed cycle one of vidaza. White cells keep...

https://connect.mayoclinic.org/comment/813524/

Discussion: Massive spleen and dangerous low platelet count

Support Group: Blood Cancers & Disorders

Posted: Feb 18, 2023