Blood Cancers & Disorders Support Group

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Comments (328)

@leene808 Your story came up while I was researching hydroxyurea (HU), and I wanted to reach...

https://connect.mayoclinic.org/comment/1618224/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jul 11 4:21pm

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

@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

Hi @divaterry, Well, dare I say welcome? I’m sure the news of having ET or essential...

https://connect.mayoclinic.org/comment/1548555/

Discussion: Shingrex and ET platelet levels

Support Group: Blood Cancers & Disorders

Posted: Apr 12 9:24am

Hi @trillium, while many patients with polycythemia vera (PV), essential thrombocythemia (ET) or myelofibrosis (MF) have...

https://connect.mayoclinic.org/comment/336437/

Discussion: JAK2 negative with high platelets

Support Group: Heart & Blood Health

Posted: Mar 2, 2021

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 @cherilynb Feeling that your doctors are dismissive is one of the most frustrating things. Especially...

https://connect.mayoclinic.org/comment/845127/

Discussion: Thrombocythemia - GP can’t find the cause

Support Group: Blood Cancers & Disorders

Posted: Apr 18, 2023

Good morning, @taisaint. Welcome you to Mayo Connect. You’ve recently been diagnosed Essential thrombocythemia and Polycythemia...

https://connect.mayoclinic.org/comment/967884/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Nov 20, 2023

Hello, susi1950. HU slows production of platelets. It does not destroy them. As far as I...

https://connect.mayoclinic.org/comment/1615983/

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

Support Group: Blood Cancers & Disorders

Posted: Jul 8 6:28pm

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

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 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 @mcsulli There are numerous reports released, including from PubMed, regarding the studies on Besremi to...

https://connect.mayoclinic.org/comment/1661535/

Discussion: BESREMi anyone?

Support Group: Blood Cancers & Disorders

Posted: 4 days ago

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 @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

Hi @dewz13 It’s not unusual for blood numbers to fluctuate when we receive vaccines. Most people...

https://connect.mayoclinic.org/comment/1549508/

Discussion: Shingrex and ET platelet levels

Support Group: Blood Cancers & Disorders

Posted: Apr 13 9:42am

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

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

Hi @ladyplumber7 Certainly as a patient you have a right to decide against any treatments or...

https://connect.mayoclinic.org/comment/1642443/

Discussion: Bone marrow biopsy: Was it painful?

Support Group: Blood Cancers & Disorders

Posted: Aug 10 12:14pm

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