Blood Cancers & Disorders Support Group

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Comments (436)

@drbart86 hi, I was diagnosed with two mutations in the bone marrow Jak2 and Calr, apparently...

https://connect.mayoclinic.org/comment/1483684/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 16 9:13am

Good information! I think I’m sliding down with HU and worried about waiting for a recheck....

https://connect.mayoclinic.org/comment/1350617/

Discussion: Will my Hydroxyurea dose ever be reduced? Does this happen with ET?

Support Group: Blood Cancers & Disorders

Posted: Jul 17, 2025

Hi I am taking hydrea 500 mg twice a day and once on alternative days...I have...

https://connect.mayoclinic.org/comment/1279482/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Apr 11, 2025

The same happened to me but ok for now on jakifi.I am 75 and hate to...

https://connect.mayoclinic.org/comment/1244972/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Feb 24, 2025

Hi Diane - I am 61 and 9 months post allogeneic stem cell transplant for eosinophilic...

https://connect.mayoclinic.org/comment/1368373/

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

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

Posted: Aug 11, 2025

I also go to Mayo in Jacksonville for treatment for ET. I was initially going to...

https://connect.mayoclinic.org/comment/1351178/

Discussion: No appointment scheduled for my labs at Mayo...??

Support Group: Blood Cancers & Disorders

Posted: Jul 18, 2025

I was on Hydrea for two months with no significant change to high platelets and then...

https://connect.mayoclinic.org/comment/1301879/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: May 11, 2025

Thanks to everyone on this forum , I was diagnosed with two mutations middle last year,...

https://connect.mayoclinic.org/comment/1285436/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 19, 2025

Hi - I took jakifi for 10 months before my stem cell transplant for chronic eosinophilic...

https://connect.mayoclinic.org/comment/1271889/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Apr 1, 2025

Hi again I am74 aswell and jakifi is about 18 k a month crazy expensive and...

https://connect.mayoclinic.org/comment/1236941/

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

Support Group: Blood Cancers & Disorders

Posted: Feb 14, 2025

I was diagnosed with PV in Jan 2020 but refused to take any prescription drugs till...

https://connect.mayoclinic.org/comment/1144286/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 19, 2024

I just failed hydrox and suspecting Jacafi to be offered at my next appointment...Keep us posted...

https://connect.mayoclinic.org/comment/1065373/

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

Support Group: Blood Cancers & Disorders

Posted: May 10, 2024

Yes, daily dosage. Only 1/2 phlebotomy since 2021. Platelets always good, but considering jakifi because of...

https://connect.mayoclinic.org/comment/833975/

Discussion: Hydroxyurea side effects lessen over time?

Support Group: Blood Cancers & Disorders

Posted: Mar 29, 2023

Yes, 1000 is daily dosage. When I was first diagnosed in 2021, my hematocrit was 57....

https://connect.mayoclinic.org/comment/833883/

Discussion: Hydroxyurea side effects lessen over time?

Support Group: Blood Cancers & Disorders

Posted: Mar 29, 2023

Yes . I had this for 10 1/2 years and used same medication until it no...

https://connect.mayoclinic.org/comment/50532/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Jun 2, 2017

@baygirl80 I was diagnosed with squamous cell after 5 years on Jakifi. it was removed and...

https://connect.mayoclinic.org/comment/1450727/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Dec 1, 2025