Blood Cancers & Disorders Support Group | Page 17

Hi Kelly, I too am Jak2 positive with PV diagnosed at 55 on Hydroxyurea now for...

https://connect.mayoclinic.org/comment/1127238/

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

Support Group: Blood Cancers & Disorders

Posted: Aug 20, 2024

Good morning! I wish we could have a cup of coffee together. Your post sounds familiar...

https://connect.mayoclinic.org/comment/1279837/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 12, 2025

Lots of good comments here. Just remember that everyone had a slightly different journey. I see...

https://connect.mayoclinic.org/comment/1541970/

Discussion: Essential Thrombocytosis General Questions

Support Group: Blood Cancers & Disorders

Posted: Apr 3 11:35am

@suzannebhi First of all - take a deep breath. As noted here - upon first hearing...

https://connect.mayoclinic.org/comment/1556798/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 22 11:20am

@heimbca Yes, that’s Jakafi. Not for everyone. Wasn’t for me. Felt like it was killing me....

https://connect.mayoclinic.org/comment/1503650/

Discussion: Anyone have Myelofibrosis (CMS-HCC)?

Support Group: Blood Cancers & Disorders

Posted: Feb 12 4:33am

Hello friends! I have PV WHICH TURNED INTO MF !! Had three BMB BIOPSIES ALL IN...

https://connect.mayoclinic.org/comment/1321077/

Discussion: Very anxious about bone marrow biopsy

Support Group: Blood Cancers & Disorders

Posted: Jun 5, 2025

Hi @trarenrut, ultimately your health isn’t in the hands of your hematologist/oncologist. It’s in your hands....

https://connect.mayoclinic.org/comment/1314649/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: May 28, 2025

Hi @mikefromridgefield. First, I’d like to say thank you for your service to our country. Unfortunately,...

https://connect.mayoclinic.org/comment/1435085/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Nov 10, 2025

Good morning, @samlupowitz Thanks for popping into the conversation today. What an interesting discovery and finally,...

https://connect.mayoclinic.org/comment/1503050/

Discussion: Anyone have Myelofibrosis (CMS-HCC)?

Support Group: Blood Cancers & Disorders

Posted: Feb 11 9:02am

Welcome to Connect, @shellep16 As fellow member @eloise999 mentioned, an allogenic SCT (using donor cells) would...

https://connect.mayoclinic.org/comment/1324156/

Discussion: Stem Cell Replacement

Support Group: Blood Cancers & Disorders

Posted: Jun 10, 2025

Hello Lynn, I was diagnosed during a spine surgery with platelets in the mid 700s in...

https://connect.mayoclinic.org/comment/838658/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Apr 6, 2023

jp - As an FYI - as the more I read in these (and other) posts...

https://connect.mayoclinic.org/comment/1427509/

Discussion: Hydroxyurea vs Agrilyn: Anyone switched from HU to Agrilyn?

Support Group: Blood Cancers & Disorders

Posted: Oct 31, 2025

Wow seems like a really high dose to start. I was on HU for over 5...

https://connect.mayoclinic.org/comment/1377269/

Discussion: Essential thrombocythemia (ET): When to start hydroxyurea (HU)?

Support Group: Blood Cancers & Disorders

Posted: Aug 23, 2025

Thank so much for sharing It sounds like this is not easy fix for fatigue! I...

https://connect.mayoclinic.org/comment/1360256/

Discussion: Iron Infusions/Side Effects

Support Group: Blood Cancers & Disorders

Posted: Jul 30, 2025

I understand that itching too well, when I first got diagnosed with PV I went through...

https://connect.mayoclinic.org/comment/895517/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jul 14, 2023

I was screened for a clinical trial almost right away and qualified for the double blinded...

https://connect.mayoclinic.org/comment/617140/

Discussion: Primary Myelofibrosis diagnosis in 40’s

Support Group: Blood Cancers & Disorders

Posted: Jul 16, 2021

@janemc I had what I think was an extreme autoimmune reaction (joint / tendon pain and...

https://connect.mayoclinic.org/comment/1427163/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Oct 30, 2025

Sorry to here he joined our band of rare misfits....I have had Primary MF for two...

https://connect.mayoclinic.org/comment/132655/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Aug 8, 2020

I did try the spray and it gradually took a layer of skin off my feet,...

https://connect.mayoclinic.org/comment/1484401/

Discussion: Does anyone with Myelofibrosis suffer musscle spasm?

Support Group: Blood Cancers & Disorders

Posted: Jan 17 6:01am

You are absolutely right Fur ex, my onc wanted me to switch to Jakafi, very expensive,...

https://connect.mayoclinic.org/comment/1370311/

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

Support Group: Blood Cancers & Disorders

Posted: Aug 14, 2025