Blood Cancers & Disorders Support Group

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Comments (1,382)

@jsslmt53, welcome. We have many members who are living with Essential Thrombocythemia and talk about JAK2...

https://connect.mayoclinic.org/comment/782514/

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

Support Group: Blood Cancers & Disorders

Posted: Dec 8, 2022

I am sorry you are going through so many issues. Since you are positive for JAK2...

https://connect.mayoclinic.org/comment/836053/

Discussion: Blood Cancer - JAK2 - Autoimmune- Confusion

Support Group: Blood Cancers & Disorders

Posted: Apr 2, 2023

Yes, my naturopath has me on Nattokinese, it’s similar but different. He works w/my heme doc....

https://connect.mayoclinic.org/comment/1017850/

Discussion: Concerned about medications for ET JAK2

Support Group: Blood Cancers & Disorders

Posted: Feb 18, 2024

Today I saw the hem/onc at UCLA. I will be having a guided Bone Marrow Biopsy...

https://connect.mayoclinic.org/comment/1319791/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Jun 3, 2025

I had fatigue initially but after being on hydroxyurea for 6 months (500 mg day) and...

https://connect.mayoclinic.org/comment/1538746/

Discussion: Essential Thrombocytosis General Questions

Support Group: Blood Cancers & Disorders

Posted: Mar 30 11:36am

My son is almost 47 and has been dealing with high platelet count 750,000 for about...

https://connect.mayoclinic.org/comment/194300/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Apr 5, 2019

I was wondering the same thing- that it took Jackie to do her own research. For...

https://connect.mayoclinic.org/comment/1195078/

Discussion: My mom has Polycythemia Vera: Can PV be managed without phlebotomies?

Support Group: Blood Cancers & Disorders

Posted: Dec 22, 2024

Are you by chance taking testosterone, either by injection or a topical preparation? Polycythemia (but not...

https://connect.mayoclinic.org/comment/784089/

Discussion: Polycythemia Vera - Help getting Diagnosis

Support Group: Blood Cancers & Disorders

Posted: Dec 12, 2022

I could use any links that you have also. It is hard finding I anything on...

https://connect.mayoclinic.org/comment/1395872/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Sep 18, 2025

That’s so interesting you weren’t getting a CBC draw in all that time. I had always...

https://connect.mayoclinic.org/comment/1323595/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Jun 9, 2025

I am JAK2 positive with ET and my platelets are still in the millions. I started...

https://connect.mayoclinic.org/comment/846777/

Discussion: Jak 2 Positive with Elevated Platelets: What symptoms do you have?

Support Group: Blood Cancers & Disorders

Posted: Apr 21, 2023

Sorry, "driver mutation" just refers to the mutation you have that causes the ET. You are...

https://connect.mayoclinic.org/comment/781585/

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

Support Group: Blood Cancers & Disorders

Posted: Dec 6, 2022

I didn’t get diagnosed with JAK2 and PV (2022)until a year after a hysterectomy (2021). (They...

https://connect.mayoclinic.org/comment/763289/

Discussion: Polycythemia: Are you asymptomatic?

Support Group: Blood Cancers & Disorders

Posted: Oct 20, 2022

Are you positive for JK2? I have PV with A positive JAK2 on hydrox for 2...

https://connect.mayoclinic.org/comment/1299114/

Discussion: Primary Myelofibrosis: Continue watch & wait? 2nd opinion?

Support Group: Blood Cancers & Disorders

Posted: May 7, 2025

I also had PCV dx and was already taking a blood anti coagulant(xarelto) and baby aspirin...

https://connect.mayoclinic.org/comment/1086296/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jun 13, 2024

Good morning, @mags17 Polycythemia Vera is a blood condition where too many red blood cells are...

https://connect.mayoclinic.org/comment/919145/

Discussion: Polycythaemia Ruba Vera, Jak2 mutation & link to Sleep Apnea

Support Group: Blood Cancers & Disorders

Posted: Aug 26, 2023

No, it was not mentioned. I did have three different blood tests done which showed I...

https://connect.mayoclinic.org/comment/827610/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 17, 2023

I also suffer from low iron after many phlebotomies. I had an iron infusion one year...

https://connect.mayoclinic.org/comment/1225254/

Discussion: Polycythemia Vera and low iron

Support Group: Blood Cancers & Disorders

Posted: Jan 30, 2025

I’m wondering who tried the keto diet and how it worked. I started keto a year...

https://connect.mayoclinic.org/comment/775370/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Nov 20, 2022

Have you been tested for gout? My JAK2 was determined after I complained of bad knee...

https://connect.mayoclinic.org/comment/1348052/

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

Support Group: Blood Cancers & Disorders

Posted: Jul 14, 2025