Blood Cancers & Disorders Support Group

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Comments (1,400)

Hi @jodyjazz. Hydroxyurea (HU) has been a frontline treatment for ET for decades for millions of...

https://connect.mayoclinic.org/comment/1515285/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Feb 26 5:56pm

Hi @tennis7777, welcome to Connect. I’m not a medical professional but from my experience of having...

https://connect.mayoclinic.org/comment/1011277/

Discussion: Polycythemia Vera and Nutritional Ketosis

Support Group: Blood Cancers & Disorders

Posted: Feb 7, 2024

Similar to you, I was diagnosed based on blood work, not symptoms. Platelets were a bit...

https://connect.mayoclinic.org/comment/1010600/

Discussion: Essential Thrombocythemia (ET): foods, diet, nutrition?

Support Group: Blood Cancers & Disorders

Posted: Feb 6, 2024

Thanks Eileen. I had terrible mouth sores with HU and went off for about a month...

https://connect.mayoclinic.org/comment/792213/

Discussion: High platelets, Jak2, ET, and pre-fib new diagnosis

Support Group: Blood Cancers & Disorders

Posted: Jan 4, 2023

You seem extremely responsive to Hydroxyurea (HU) if your platelets came down in only ten days....

https://connect.mayoclinic.org/comment/777871/

Discussion: I have JAK2 ET and MPN: Anyone else have these symptoms?

Support Group: Blood Cancers & Disorders

Posted: Nov 27, 2022

I too have ET with Jak2, diagnosed in Oct 2022 at age 64. My platlet count...

https://connect.mayoclinic.org/comment/1488594/

Discussion: I have JAK2 ET and MPN: Anyone else have these symptoms?

Support Group: Blood Cancers & Disorders

Posted: Jan 22 8:22am

Hello all, Glad to have found this group. I am Alisa, a 59 year old female...

https://connect.mayoclinic.org/comment/1447453/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Nov 25, 2025

I take HU daily 500mg every night before bed. I sleep okay, but often have some...

https://connect.mayoclinic.org/comment/1325670/

Discussion: Contolling Hydroxyurea fatigue by time of day you take the medication

Support Group: Blood Cancers & Disorders

Posted: Jun 12, 2025

I was given the option for a bone marrow test and did some research and decided...

https://connect.mayoclinic.org/comment/1270620/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 31, 2025

Hi Steve, Becky has the JAK2 mutation which, from my understanding, makes primary ET more likely,...

https://connect.mayoclinic.org/comment/1154236/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Oct 8, 2024

Just to add my two cents that may be helpful: My wife has recently been diagnosed...

https://connect.mayoclinic.org/comment/1152194/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Oct 5, 2024

Hang in there. I went undiagnosed for nearly a year. I have had blood work and...

https://connect.mayoclinic.org/comment/1060466/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: May 1, 2024

I was diagnosed with MDS/MPN-RS-T in 2018. I have three mutations -JAK2, SRFS2 and IDH1-R132H. My...

https://connect.mayoclinic.org/comment/1042552/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 30, 2024

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

After being diagnosed with ALL, then T-Cell large granular LL. I wondered by my platelets went...

https://connect.mayoclinic.org/comment/1325185/

Discussion: I am looking for advice on lab work and how to address my Dr about it

Support Group: Blood Cancers & Disorders

Posted: Jun 11, 2025

My hematologist about 6 yrs ago diagnosed me with primary myelofibrosis at 71 yrs old, after...

https://connect.mayoclinic.org/comment/1217600/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 20, 2025

Hi, my name is Carlavan and I to have ET with JAK2 mutation, my initial complaint...

https://connect.mayoclinic.org/comment/276870/

Discussion: Anyone have CALR mutation with constitutional symptoms?

Support Group: Blood Cancers & Disorders

Posted: Sep 24, 2019

I get annual labs with my physical so we know it's new for me. PLUS I...

https://connect.mayoclinic.org/comment/843149/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 14, 2023

Hi @themyth, with Polycythemia Vera, too many red blood cells are produced resulting in the high...

https://connect.mayoclinic.org/comment/821819/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Mar 6, 2023

@roughanne I too am starting to have neuropathy in my feet and it happens all day...

https://connect.mayoclinic.org/comment/1459504/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Dec 12, 2025

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