Blood Cancers & Disorders Support Group

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Comments (2,273)

et1055, we are all different. We all react differently to medications. Please, ask your hematologist this...

https://connect.mayoclinic.org/comment/1211072/

Discussion: Does ET or HU affect liver functions?

Support Group: Blood Cancers & Disorders

Posted: Jan 14, 2025

Hi @blkalydy973 Welcome back to Connect. We have a number of members in the forum who...

https://connect.mayoclinic.org/comment/917074/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Aug 22, 2023

HU hasn't seemed to given me any problems unless it is sexual disfunction, although that could...

https://connect.mayoclinic.org/comment/1050025/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Apr 13, 2024

Does it make a difference whether a blood test or bone marrow biopsy was done? I...

https://connect.mayoclinic.org/comment/877565/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jun 13, 2023

My daughter, age 39, platelets went to 1.5 million recently. Her blood work showed ET (CALR)....

https://connect.mayoclinic.org/comment/251998/

Discussion: High platelet count: What does this mean?

Support Group: Blood Cancers & Disorders

Posted: Feb 27, 2019

I was diagnosed with ET JAX2+ on 4/30/25 with a count of 553. My hematologist put...

https://connect.mayoclinic.org/comment/1313486/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: May 26, 2025

I've had this tingling feeling and numbness way before I started the hydroxyurea and before I...

https://connect.mayoclinic.org/comment/1157943/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Oct 16, 2024

Hello! Just wanted to say, fatigue is built into ET and all the other MPNs. As...

https://connect.mayoclinic.org/comment/1494648/

Discussion: ET and high ferritin levels with increase fatigue

Support Group: Blood Cancers & Disorders

Posted: Jan 31 6:43am

Good morning, @nohrt4me I hope you won’t take too long of a break! ☺️ I think...

https://connect.mayoclinic.org/comment/1211190/

Discussion: Starting 17th year with ET. What's ahead?

Support Group: Blood Cancers & Disorders

Posted: Jan 14, 2025

I'm CALR, too. Been on HU for 6 years and bloodwork very stable in 400s once...

https://connect.mayoclinic.org/comment/1089100/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jun 18, 2024

I can relate to so much of the OP's story! Have had ET (CALR+) for 15...

https://connect.mayoclinic.org/comment/1060750/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: May 2, 2024

I'm 68 have had ET for 12 years. Doing ok on hydroxy and aspirin. Fortunately was...

https://connect.mayoclinic.org/comment/753647/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Sep 25, 2022

I'm 75, too. My count was 553 when my doc started me on baby aspirin on...

https://connect.mayoclinic.org/comment/1319345/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Jun 3, 2025

Honestly, I really do not think my O/H knows if I have ET or Myelofibrosis. I...

https://connect.mayoclinic.org/comment/1281668/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Apr 14, 2025

I have ET with the JAK2 mutation and my hematologist-oncologist has me on both HU and...

https://connect.mayoclinic.org/comment/1085943/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jun 13, 2024

I have low iron but not anemic. Iron supplements are helping my low RBC. I take...

https://connect.mayoclinic.org/comment/1000612/

Discussion: Anyone take an iron supplement for low red blood cell count?

Support Group: Blood Cancers & Disorders

Posted: Jan 20, 2024

Eileen, Is your hematologist from the Mayo Clinic? I live in a small rural town and...

https://connect.mayoclinic.org/comment/894807/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jul 13, 2023

anavleek, for me at least HU not only brought down my platelet count, it also gave...

https://connect.mayoclinic.org/comment/1281645/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 14, 2025

Welcome @ksyren! We’re all about hope here in Connect. It is so comforting to know others...

https://connect.mayoclinic.org/comment/1202501/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Jan 2, 2025

Yes, I have that. I fill my hot water bottle with cool water and put my...

https://connect.mayoclinic.org/comment/1062458/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: May 5, 2024