Blood Cancers & Disorders Support Group

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Comments (527)

My experience was the best possible. I arrived, was put in a gown, and given a...

https://connect.mayoclinic.org/comment/1166063/

Discussion: What was your experience with bone marrow biopsy?

Support Group: Blood Cancers & Disorders

Posted: Nov 1, 2024

Welcome to Connect, @pearly, and thank you for sharing your history. Essential thrombocythaemia (ET) is indeed...

https://connect.mayoclinic.org/comment/146291/

Discussion: How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?

Support Group: Blood Cancers & Disorders

Posted: Apr 9, 2017

Hi @davi0937 , No, none of my doctors have told me how myelofibrosis affects bone health....

https://connect.mayoclinic.org/comment/1537215/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 28 10:44am

Hi @nolan, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this...

https://connect.mayoclinic.org/comment/194373/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Feb 1, 2021

Hello PV FRIEND I had PV for almost 20 years From my perspective, that is a...

https://connect.mayoclinic.org/comment/1501094/

Discussion: 71 year old female diagnosed 6 month ago with PV

Support Group: Blood Cancers & Disorders

Posted: Feb 8 3:51pm

I was exposed to Agent Orange in 1968-69, at the height of the Vietnam War. I...

https://connect.mayoclinic.org/comment/1434552/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Nov 9, 2025

I've been taking 600mgs of hydroxyurea (Droxia formulation) daily for myelofibrosis for the past 6 yrs....

https://connect.mayoclinic.org/comment/1080798/

Discussion: How fast do you start to feel hydroxyurea symptoms?

Support Group: Blood Cancers & Disorders

Posted: Jun 4, 2024

I have had polycythemia vera for over a year. I have been on Besremi for 3...

https://connect.mayoclinic.org/comment/1296587/

Discussion: Anyone used Interferon instead of HU for ET: Benefits? Side effects?

Support Group: Blood Cancers & Disorders

Posted: May 4, 2025

Hi @gajokos , No worries. I think I had forgotten to read what you wrote in...

https://connect.mayoclinic.org/comment/1501367/

Discussion: Anyone with primary myelofibrosis, low risk, asymptomatic?

Support Group: Blood Cancers & Disorders

Posted: Feb 9 2:07am

Lori, What a blessing !!! Thank you !!! Hospital missed PV Nov 2020 but; Hospitalized same...

https://connect.mayoclinic.org/comment/795959/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jan 12, 2023

I recently learned pterostilbene from blueberries offers greater quercetin absorption than resveratrol. Going in that direction...

https://connect.mayoclinic.org/comment/132654/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Aug 5, 2020

@appraiser1946 Hello! I have been on Hydroxyurea since 1992. I am 68 years old and we...

https://connect.mayoclinic.org/comment/1499715/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Feb 6 4:25pm

@ron79mds My husband who is 81 was diagnosed with myelofibrosis in January 2025. Which is a...

https://connect.mayoclinic.org/comment/1448775/

Discussion: 79 year old male with MDS: Worried about increasng fatigue

Support Group: Blood Cancers & Disorders

Posted: Nov 28, 2025

Hi Tessa My mum was diagnosed with ET when she went to routinely donate blood. She...

https://connect.mayoclinic.org/comment/1069140/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: May 16, 2024

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

I would consider looking into Besremi as an alternative to hydroxyurea. It is injected every 2...

https://connect.mayoclinic.org/comment/1421654/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 23, 2025

Hi @1pearl I am also in the US in VA, currently receiving treatment from a specialist...

https://connect.mayoclinic.org/comment/1216366/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Jan 19, 2025

I was diagnosed with WM last year. My hematologist recommended Rituximab because it would also alleviate...

https://connect.mayoclinic.org/comment/1528719/

Discussion: How to prepare for after first infusion treatment for Waldenstrom?

Support Group: Blood Cancers & Disorders

Posted: Mar 17 6:04am

Unfortunately, I had bad side effects—extreme fatigue, shortness of breath in situations where it never happened...

https://connect.mayoclinic.org/comment/861813/

Discussion: Essential thrombocytosis with MPL mutation

Support Group: Blood Cancers & Disorders

Posted: May 18, 2023

Hello friends! I have PV NOW PROGRESSED TO MF MYELOFIBROSIS ! Hot humid weather is brutal...

https://connect.mayoclinic.org/comment/1336577/

Discussion: Hot weather & Chemo/Treatments

Support Group: Blood Cancers & Disorders

Posted: Jun 27, 2025

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