Blood Cancers & Disorders Support Group

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Comments (277)

@loribmt thank you so much for your kind words! Made me tear up....because you are so...

https://connect.mayoclinic.org/comment/757007/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Oct 4, 2022

@apr931 Hi there! I wanted to chime in on your question regarding the number 32. I...

https://connect.mayoclinic.org/comment/231785/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Feb 7, 2019

Found this on Medlineplus: In general, LDH levels that are higher than normal usually mean you...

https://connect.mayoclinic.org/comment/1235011/

Discussion: High LDH with ET?

Support Group: Blood Cancers & Disorders

Posted: Feb 12, 2025

The HU should help to bring down the high platelet level to a more normal level....

https://connect.mayoclinic.org/comment/1209073/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 11, 2025

Hi @amyb52. Welcome to Connect. This is a great forum for meeting other members who share...

https://connect.mayoclinic.org/comment/882031/

Discussion: Essential thrombocytosis with MPL mutation

Support Group: Blood Cancers & Disorders

Posted: Jun 20, 2023

@dragonflylynda Oh, i’m sorry, I must have mis-read a reply…nothing wrong with my brain! LOL Well,...

https://connect.mayoclinic.org/comment/1464788/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Dec 20, 2025

Hi @eansgardengirl, Welcome to Mayo Connect. You’ve come to the right place to connect with others...

https://connect.mayoclinic.org/comment/778367/

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

Support Group: Blood Cancers & Disorders

Posted: Nov 28, 2022

I am now 65 and have been taking Hydroxyurea for 10 years to keep my platelets...

https://connect.mayoclinic.org/comment/910025/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Aug 9, 2023

There are a series of genetic tests that can be performed to help determine mutations, as...

https://connect.mayoclinic.org/comment/252004/

Discussion: High platelet count: What does this mean?

Support Group: Blood Cancers & Disorders

Posted: Mar 1, 2019

Hello @ettap and welcome to Connect. It is good to see that you have confirmed your...

https://connect.mayoclinic.org/comment/194256/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Mar 29, 2018

My blood disorder was initially diagnosed as essential thrombocythemia but was later changed to myelofibrosis. My...

https://connect.mayoclinic.org/comment/1091333/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Jun 21, 2024

I found an article for you that may help explain about the JAK2 gene and how...

https://connect.mayoclinic.org/comment/1142007/

Discussion: Jak2 positive, biopsy next: Does it mean I have blood cancer?

Support Group: Blood Cancers & Disorders

Posted: Sep 15, 2024

Hi @bshattuck138 It sounds like Becky has found the sweet spot of balance with the HU...

https://connect.mayoclinic.org/comment/1348045/

Discussion: What to look for if ET is progressing to something else.

Support Group: Blood Cancers & Disorders

Posted: Jul 14, 2025

Hi Tom, There are quite a few members in the Connect forum who have been diagnosed...

https://connect.mayoclinic.org/comment/1076631/

Discussion: Is my treatment a bit aggressive?

Support Group: Blood Cancers & Disorders

Posted: May 28, 2024

Welcome to Connect, @jtcat7. Looks like you have a full deck of mutations in your hand....

https://connect.mayoclinic.org/comment/1367613/

Discussion: Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia

Support Group: Blood Cancers & Disorders

Posted: Aug 10, 2025

I had a TIA at the end of 2014. After seeing many Doctors one Doctor referred...

https://connect.mayoclinic.org/comment/803429/

Discussion: Essential Thrombocythemia (ET) and viruses

Support Group: Blood Cancers & Disorders

Posted: Jan 29, 2023

If you decide to take HU, try it a couple of times per week for a...

https://connect.mayoclinic.org/comment/1022375/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Feb 25, 2024

I was recently diagnosed with Essential thrombocythemia. My platelet count was in the upper 700's. Hematologist...

https://connect.mayoclinic.org/comment/941461/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Oct 3, 2023

Hi @mtnlife, we’re often our own worst enemies when it comes to all things medical. I...

https://connect.mayoclinic.org/comment/791520/

Discussion: High Platelets

Support Group: Blood Cancers & Disorders

Posted: Jan 2, 2023

Welcome to Connect @jv4430. There are a number bone marrow disorders related to the JAK2 gene...

https://connect.mayoclinic.org/comment/969785/

Discussion: JAK2 V617F positive, now what?

Support Group: Blood Cancers & Disorders

Posted: Nov 24, 2023