Blood Cancers & Disorders Support Group

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Comments (1,383)

1. Thank you for your service. I, too, was in the Navy a long time ago!...

https://connect.mayoclinic.org/comment/890649/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jul 5, 2023

Hi there, Yes, this diagnosis does seem to be extremely rare! I don't qualify for RARS-T...

https://connect.mayoclinic.org/comment/865772/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: May 24, 2023

Thanks for the question. I was diagnosed with Thrombocytosis, Essential Thrombocythemia and JAK2 gene mutation over...

https://connect.mayoclinic.org/comment/328592/

Discussion: JAK2 Mutation, Low Iron and High Platelet count

Support Group: Blood Cancers & Disorders

Posted: Feb 16, 2021

hey carlavan. i am soo sorry to here about you but i can feel you because...

https://connect.mayoclinic.org/comment/758124/

Discussion: Anyone have CALR mutation with constitutional symptoms?

Support Group: Blood Cancers & Disorders

Posted: Oct 6, 2022

Hi @pennyhedgecoth and welcome to the Blood Cancers & Disorders group. I'm glad you found us....

https://connect.mayoclinic.org/comment/329372/

Discussion: JAK2 ASXL1 Mutations: Anyone else?

Support Group: Blood Cancers & Disorders

Posted: Dec 9, 2020

I have rarely had headaches, either before or after dx. Heavy periods, like my mother. But,...

https://connect.mayoclinic.org/comment/1402676/

Discussion: I am curious: What symptoms did everyone have in the beginning for PV?

Support Group: Blood Cancers & Disorders

Posted: Sep 27, 2025

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

Welcome to Connect, @johngrudnowski. I’m a little envious to see you’re in Costa Rica…sunshine and warmth!...

https://connect.mayoclinic.org/comment/999949/

Discussion: People living with ET and taking Hydrea: Anybody setting records?

Support Group: Blood Cancers & Disorders

Posted: Jan 19, 2024

Hi, Thanks for your input. I have JAK2 mutation too, just found out in April. How...

https://connect.mayoclinic.org/comment/987914/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Dec 28, 2023

My husband was dx with Jak2 about 10 months go when his WBC was high on...

https://connect.mayoclinic.org/comment/599791/

Discussion: JAK2 Mutation, Low Iron and High Platelet count

Support Group: Blood Cancers & Disorders

Posted: May 6, 2021

I traveled as usual and flew places in 2020 and enjoyed many wonderful experiences with family...

https://connect.mayoclinic.org/comment/194376/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Feb 4, 2021

A GP is not going to have any answers for you. They do not specialize in...

https://connect.mayoclinic.org/comment/328574/

Discussion: JAK2 Mutation, Low Iron and High Platelet count

Support Group: Blood Cancers & Disorders

Posted: Dec 16, 2020

Hi lyd0218, Please share what you find out about if they can tell if you are...

https://connect.mayoclinic.org/comment/1314907/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: May 28, 2025

I've been on HU for 2 years, 500 mg, 4x week, baby aspirin 2x day, and...

https://connect.mayoclinic.org/comment/1210567/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 13, 2025

Hi Vicky58, There’s a large network of members in Connect who also have ET and share...

https://connect.mayoclinic.org/comment/1102781/

Discussion: HU & Titanium Oxide

Support Group: Blood Cancers & Disorders

Posted: Jul 10, 2024

Hi there, I have MDS/MPN overlap. I have the JAK2 mutation and have been on 500...

https://connect.mayoclinic.org/comment/1027326/

Discussion: Pain in Upper Left Abdomen

Support Group: Blood Cancers & Disorders

Posted: Mar 4, 2024

I started HU once a week for a month, then 2x week for 8 months. This...

https://connect.mayoclinic.org/comment/1006501/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Jan 30, 2024

Hi winmil99, Welcome to the site. I was diagnosed in June 2022 with platelets at 735....

https://connect.mayoclinic.org/comment/887358/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jun 29, 2023

I was really interested in what your MPN Specialist had to say. I also have had...

https://connect.mayoclinic.org/comment/792671/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 5, 2023

Your story sounds just like mine. My platelets started rising slowly over four years. It hit...

https://connect.mayoclinic.org/comment/778218/

Discussion: Essential thrombocytosis with MPL mutation

Support Group: Blood Cancers & Disorders

Posted: Nov 28, 2022