Blood Cancers & Disorders Support Group

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Comments (2,270)

Hi pj -how long have your platelets stayed at that level? Do you have the JAK2...

https://connect.mayoclinic.org/comment/1066167/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: May 11, 2024

Is a bone marrow test necessary? I was diagnosed with ET through blood tests. I'm JAK2...

https://connect.mayoclinic.org/comment/827322/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 17, 2023

Hi there my son is only 25 and has been diagnosed with ET and IBD that...

https://connect.mayoclinic.org/comment/805170/

Discussion: Essential Thrombocythemia (ET) and viruses

Support Group: Blood Cancers & Disorders

Posted: Feb 2, 2023

@jbcl do you have MF or ET? I’d gladly go back on Hydroxyurea, but have you...

https://connect.mayoclinic.org/comment/1437833/

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

Support Group: Blood Cancers & Disorders

Posted: Nov 13, 2025

ET-CALR x 17 years, on HU for 6, age 70. Did yr doc say why he...

https://connect.mayoclinic.org/comment/1321326/

Discussion: Essential Thrombocythemia treatment with Besremi

Support Group: Blood Cancers & Disorders

Posted: Jun 6, 2025

Hi, I have neuropathy in both feet and hands, at night time it gets really bad....

https://connect.mayoclinic.org/comment/1279336/

Discussion: Does your oncologist acknowledge that ET may cause bone pain?

Support Group: Blood Cancers & Disorders

Posted: Apr 11, 2025

Hello, I am 1.5 years into taking it. My platelets were 950 as well and I...

https://connect.mayoclinic.org/comment/950065/

Discussion: Anyone else find the side effects of Hydrea 500MG frightening?

Support Group: Blood Cancers & Disorders

Posted: Oct 19, 2023

I was recently diagnosed with triple negative ET, after a bone marrow biopsy. I had been...

https://connect.mayoclinic.org/comment/1382146/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Aug 29, 2025

I have ET CALR9 and just started on Hydrea 500 mg twice a day. I also...

https://connect.mayoclinic.org/comment/1553201/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 17 10:54pm

Welcome to Connect, @clareaq. Your experince shows the importance of working with a MPN specialist when...

https://connect.mayoclinic.org/comment/1017839/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Feb 18, 2024

Wondering why Xarelto? I'm in 70s diagnosed in 2019, on HU plus baby aspirin. My platelets...

https://connect.mayoclinic.org/comment/796538/

Discussion: High platelet count: What does this mean?

Support Group: Blood Cancers & Disorders

Posted: Jan 14, 2023

Yes, great points. The more I read and learn about other patients the more I have...

https://connect.mayoclinic.org/comment/1364023/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Aug 5, 2025

Thank you for your reply. I take HU 500 mg. every day too. Thank you regarding...

https://connect.mayoclinic.org/comment/947648/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Oct 14, 2023

Yes, my naturopath has me on Nattokinese, it’s similar but different. He works w/my heme doc....

https://connect.mayoclinic.org/comment/1017850/

Discussion: Concerned about medications for ET JAK2

Support Group: Blood Cancers & Disorders

Posted: Feb 18, 2024

@leene808 Just want to say your posts are inspiring and reassuring to me and probably to...

https://connect.mayoclinic.org/comment/1413180/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 11, 2025

My hematologist continues to say ET and MF are blood conditions. He said they have been...

https://connect.mayoclinic.org/comment/1278103/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Apr 9, 2025

Thanks. I've often wondered whether the lethargy and brain fog were more from the ET or...

https://connect.mayoclinic.org/comment/1037759/

Discussion: Started Hydroxyurea: How long to see decrease in counts?

Support Group: Blood Cancers & Disorders

Posted: Mar 21, 2024

call the cancer foundation they will be able to help you find the proper doctor and...

https://connect.mayoclinic.org/comment/950001/

Discussion: Needing help understanding ET and how it affects my life

Support Group: Blood Cancers & Disorders

Posted: Oct 18, 2023

Sorry, "driver mutation" just refers to the mutation you have that causes the ET. You are...

https://connect.mayoclinic.org/comment/781585/

Discussion: How did you make the final decision to begin HU protocol for ET?

Support Group: Blood Cancers & Disorders

Posted: Dec 6, 2022

I also have arthritis and degenerative disc disease. Chronic pain from my neck down most days....

https://connect.mayoclinic.org/comment/767000/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 29, 2022