Blood Cancers & Disorders Support Group

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Comments (1,383)

Hi, I was diagnosed with ET January 2025 after routine physical from high platelets in lab...

https://connect.mayoclinic.org/comment/1347917/

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

Support Group: Blood Cancers & Disorders

Posted: Jul 14, 2025

My mother had polycythemia Vera in the 1990's. She had it for about 10 years and...

https://connect.mayoclinic.org/comment/1301191/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: May 10, 2025

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

Thanks. Yes, registration is free. The thing I noticed on the protocols was that patients should...

https://connect.mayoclinic.org/comment/1400893/

Discussion: Living with ET

Support Group: Blood Cancers & Disorders

Posted: Sep 25, 2025

Slightly different scenario but thought I'd pass it along. My 72 year old wife had a...

https://connect.mayoclinic.org/comment/1200307/

Discussion: Has anyone had a total knee replacement that also has JAK2?

Support Group: Blood Cancers & Disorders

Posted: Dec 30, 2024

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

I was dx almost two yrs ago and was put on HU which I stayed on...

https://connect.mayoclinic.org/comment/1444502/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Nov 22, 2025

well it doesn't just occur with ET ..PV JAK2 mutation another myloproliferative neoplasm is very often...

https://connect.mayoclinic.org/comment/1530064/

Discussion: ET: untreated elevated platelets for over 13 years

Support Group: Blood Cancers & Disorders

Posted: Mar 18 3:29pm

I take HU, 500 mg, 2x week, and I am fatigued. I just try to keep...

https://connect.mayoclinic.org/comment/975898/

Discussion: Essential Thrombocytosis: What amount of hydroxy do you take?

Support Group: Blood Cancers & Disorders

Posted: Dec 6, 2023

I have been on hydroxyurea for 10 months now after getting a diagnosis of ET Jak2.....My...

https://connect.mayoclinic.org/comment/918086/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Aug 24, 2023

Are you being seen by a hematologist or your GP? What are your platelets? From what...

https://connect.mayoclinic.org/comment/776839/

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

Support Group: Blood Cancers & Disorders

Posted: Nov 24, 2022

I’ve been on Hydroxyurea for 5 mos 500 mg 5 days a week for ETwith positive...

https://connect.mayoclinic.org/comment/1379028/

Discussion: Essential thrombocythemia (ET): When to start hydroxyurea (HU)?

Support Group: Blood Cancers & Disorders

Posted: Aug 25, 2025

Hi arecchie, I was diagnosed with ET (Jak2 mutation) in November 2022. Started with 500 mg...

https://connect.mayoclinic.org/comment/1248006/

Discussion: How long before side effects from Hydrea start?

Support Group: Blood Cancers & Disorders

Posted: Mar 1, 2025

Yes, I can sure understand wanting a firm diagnosis before taking meds, and you are right...

https://connect.mayoclinic.org/comment/1220505/

Discussion: What are pros of hydroxyurea vs other methods of lowering platelets?

Support Group: Blood Cancers & Disorders

Posted: Jan 24, 2025

Sounds like Becky has been through quite a lot. I am looking at mitral valve repair,...

https://connect.mayoclinic.org/comment/1154916/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Oct 10, 2024

Additional symptoms I'm experiencing include: swollen lymph nodes on sides of neck and sore throat over...

https://connect.mayoclinic.org/comment/284522/

Discussion: Jak 2 and Waldenstrom's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Dec 5, 2019

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