Blood Cancers & Disorders Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

1,177 total results

Comments (1,103)

If you have ET, genetic tests help determine your clot risk. I am 70. I have...

https://connect.mayoclinic.org/comment/1040439/

Discussion: Im 64 and my blood platelets have been in the low 530-550 range for yr

Support Group: Blood Cancers & Disorders

Posted: Mar 26, 2024

Thank you for your response. If I’ve been sitting without much movement, I can wake up...

https://connect.mayoclinic.org/comment/686238/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 3, 2022

As far as I know, ET with a positive JAK2 mutation normally suggests you have a...

https://connect.mayoclinic.org/comment/284525/

Discussion: Jak 2 and Waldenstrom's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Dec 11, 2019

Might be good to find out what driver mutation you have--JAK2, MPL, or CALR. It makes...

https://connect.mayoclinic.org/comment/1088475/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jun 17, 2024

Wow that is an extremely high amount to start on but I can only assume it...

https://connect.mayoclinic.org/comment/1065766/

Discussion: Polycythemia Vera or Essential Thrombocythemia ?

Support Group: Blood Cancers & Disorders

Posted: May 11, 2024

Hi Arti4, I was experiencing allot of bad itching before my Et/Jak2 diagnosis and my dermatologist...

https://connect.mayoclinic.org/comment/874288/

Discussion: MGUS and restless leg syndrome

Support Group: Blood Cancers & Disorders

Posted: Jun 7, 2023

During a 5th spine surgery at age 79, I was diagnosed with Jak2 mutation. My platelet...

https://connect.mayoclinic.org/comment/801488/

Discussion: Essential Thrombocythemia (ET) and viruses

Support Group: Blood Cancers & Disorders

Posted: Jan 25, 2023

I was diagnosed in 2001 with PV/ jak2 mutated with blood withdrawals until 2012 Myelofibrosis diagnosed...

https://connect.mayoclinic.org/comment/794654/

Discussion: Any suggestions for chronic shortness of breath with PV?

Support Group: Blood Cancers & Disorders

Posted: Jan 10, 2023

@tkp22, I can understand you're worried. It sounds like your health care team is being thorough....

https://connect.mayoclinic.org/comment/719785/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 21, 2022

I just turned 67, and was diagnosed with ET JAK2 a few months ago. Although I’m...

https://connect.mayoclinic.org/comment/1196178/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Dec 23, 2024

New to this group. I've been diagnosed with an MPN ET with JAK2. Doctor has put...

https://connect.mayoclinic.org/comment/1192587/

Discussion: How fast do you start to feel hydroxyurea symptoms?

Support Group: Blood Cancers & Disorders

Posted: Dec 17, 2024

I also started with platelets over one million at age 39. Now I'm 69. I'm also...

https://connect.mayoclinic.org/comment/1041181/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 27, 2024

I'm 69 years old, JAK2 mutation, and diagnosed with ET this past November with platelets around...

https://connect.mayoclinic.org/comment/1026487/

Discussion: ET: What are acceptable platelet numbers?

Support Group: Blood Cancers & Disorders

Posted: Mar 3, 2024

That is such encouraging news. Thank you! I did have a bone marrow biopsy & I...

https://connect.mayoclinic.org/comment/799804/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 21, 2023

Thank you Eileen, before all this occurred (ET, JAK2) I had been discussing with drs about...

https://connect.mayoclinic.org/comment/798340/

Discussion: High platelet count: What does this mean?

Support Group: Blood Cancers & Disorders

Posted: Jan 18, 2023

I am surprised you are starting on Pegasys first. From what I have read Hydroxyurea is...

https://connect.mayoclinic.org/comment/774166/

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

Support Group: Blood Cancers & Disorders

Posted: Nov 17, 2022

Hi Wiggins32, I have had slightly low iron and now take iron supplements...Many of the symptoms...

https://connect.mayoclinic.org/comment/826011/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 14, 2023

I tested negative for the jak2 went to the hematologist and he did more blood tests....

https://connect.mayoclinic.org/comment/810170/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Feb 12, 2023

You need to demand an Erythropoietin test (EPO), if this protein is low you have PV,...

https://connect.mayoclinic.org/comment/783931/

Discussion: Polycythemia Vera - Help getting Diagnosis

Support Group: Blood Cancers & Disorders

Posted: Dec 12, 2022

Hi everyone, I am newly diagnosed (Fall 2021) and have the JAK2 V617F mutation. In my...

https://connect.mayoclinic.org/comment/770649/

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

Support Group: Blood Cancers & Disorders

Posted: Nov 8, 2022