Blood Cancers & Disorders Support Group

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Comments (445)

I had symptoms for many years finally diagnosed three years ago. Jakafi twice a day helps...

https://connect.mayoclinic.org/comment/760171/

Discussion: Polycythemia: Are you asymptomatic?

Support Group: Blood Cancers & Disorders

Posted: Oct 12, 2022

Hello sorry for delayed response. I have had PV with JAK2 for almost 5 years. I...

https://connect.mayoclinic.org/comment/788322/

Discussion: Anyone with PV have insensitivity to cold?

Support Group: Blood Cancers & Disorders

Posted: Dec 24, 2022

I’ve had Polycythemia Vera for 14 yrs, then RBC went up, I was prescribed taking 1000mg...

https://connect.mayoclinic.org/comment/1270863/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Mar 31, 2025

Hello PV friend ! I have been on JAKAFI FOR 10 months took 20 milligrams a...

https://connect.mayoclinic.org/comment/1310325/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: May 22, 2025

I was on hydroxides for several years but it reached a point where it wasn’t working...

https://connect.mayoclinic.org/comment/1366935/

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

Support Group: Blood Cancers & Disorders

Posted: Aug 9, 2025

I was diagnosed with ET in 2019. I have only been taking an aspirin a day....

https://connect.mayoclinic.org/comment/1523256/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 9 12:20pm

I had severe itching until they gave me Jakafi. Absolute miracle drug for me. No itching,...

https://connect.mayoclinic.org/comment/1303779/

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

Support Group: Blood Cancers & Disorders

Posted: May 14, 2025

I am currently taking Jakafi. It's not a chemo drug and it doesn't have the side...

https://connect.mayoclinic.org/comment/1014197/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Feb 12, 2024

@tamijulien Can you summarize your experience? I am hoping that you have had a successful treatment...

https://connect.mayoclinic.org/comment/1518102/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 2 5:49pm

Is there anyone out there that has been diagnosed with both polycythemia vera and myelo fibrosis?...

https://connect.mayoclinic.org/comment/781275/

Discussion: High Platelets

Support Group: Blood Cancers & Disorders

Posted: Dec 5, 2022

I have been taking 5ml Jakafi twice a day for three years. It has been a...

https://connect.mayoclinic.org/comment/1174412/

Discussion: Anyone had adverse effects from Jakafi (ruxolitinib) for PV?

Support Group: Blood Cancers & Disorders

Posted: Nov 16, 2024

This is the first discussion I have seen concerning myelofibrosis. I was diagnosed with Primary myelofibrosis...

https://connect.mayoclinic.org/comment/1209703/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 12, 2025

I would like to invite @gael, @wellness3070, @jfinlay, @djr, and @bijou have all discussed taking jakafi...

https://connect.mayoclinic.org/comment/256902/

Discussion: Are you taking medication for JAK2? How does it affect you?

Support Group: Blood Cancers & Disorders

Posted: Mar 29, 2019

@blu555 , thanks for sharing your Jakafi experience, being a fairly new drug there is not...

https://connect.mayoclinic.org/comment/1470135/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Dec 29, 2025

Thank you Lori, I was diagnosed in August but only started HU two weeks ago when...

https://connect.mayoclinic.org/comment/1306940/

Discussion: Developed Rash on Hydroxyurea (HU)

Support Group: Blood Cancers & Disorders

Posted: May 18, 2025

I have been on Jakafi for several years now. I don't seem to have any side...

https://connect.mayoclinic.org/comment/1313821/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: May 27, 2025

Quick update. Still on the Merck trial (control) but have had to ups my dose of...

https://connect.mayoclinic.org/comment/1572187/

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

Support Group: Blood Cancers & Disorders

Posted: 6 days ago

Besremi may not be a normal ET med, 2 docs (both mpn specialists at research institutions)...

https://connect.mayoclinic.org/comment/1453474/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Dec 5, 2025

After having terrible side effects while taking HU my doctor had me switch to Jakafi. Three...

https://connect.mayoclinic.org/comment/994946/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Jan 10, 2024

I also am taking Jakafi. It helps immensely with PV side effects however I still need...

https://connect.mayoclinic.org/comment/887767/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jun 30, 2023

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