Blood Cancers & Disorders Support Group

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Comments (1,382)

Hi there I'm Jola 67 I have just been diagnosed with ET JAK2 have just started...

https://connect.mayoclinic.org/comment/887506/

Discussion: Essential Thrombocythemia (ET): foods, diet, nutrition?

Support Group: Blood Cancers & Disorders

Posted: Jun 30, 2023

Thank you for responding…after about a month of fighting with h the insurance company to approve...

https://connect.mayoclinic.org/comment/886301/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jun 27, 2023

I think in the United States some insurance companies make you do step therapy…hydroxyurea first before...

https://connect.mayoclinic.org/comment/790422/

Discussion: New to Pegasys for ET - advice please!

Support Group: Blood Cancers & Disorders

Posted: Dec 30, 2022

@ettap , Great comment. Most importantly, because it pertains to me, as well!(!) Anyway, I have...

https://connect.mayoclinic.org/comment/652790/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Nov 10, 2021

When they do the bone marrow (BM) procedure they should do a molecular panel which looks...

https://connect.mayoclinic.org/comment/328591/

Discussion: JAK2 Mutation, Low Iron and High Platelet count

Support Group: Blood Cancers & Disorders

Posted: Feb 16, 2021

Hi all.having been diagnosed with two mutations jak2 and calf ihave been on double dosage of...

https://connect.mayoclinic.org/comment/1288834/

Discussion: How long you can live taking Hydrea (Hydroxyurea)?

Support Group: Blood Cancers & Disorders

Posted: Apr 24, 2025

Your "acceptable" number may vary depending on age, clot history, and driver mutation. If you are...

https://connect.mayoclinic.org/comment/1134086/

Discussion: ET: What are acceptable platelet numbers?

Support Group: Blood Cancers & Disorders

Posted: Aug 31, 2024

I am suspecting I'll be soon officially diagnosed with PV. I'm JAK2 and blood numbers trending...

https://connect.mayoclinic.org/comment/193900/

Discussion: Polycythemia Vera and Nutritional Ketosis

Support Group: Blood Cancers & Disorders

Posted: Feb 1, 2019

I was diagnosed with ET Jak2 in 2021, my platelets went over 1,000, with HU and...

https://connect.mayoclinic.org/comment/930012/

Discussion: Thrombocythemia and need neck surgery: Will surgery make it worse?

Support Group: Blood Cancers & Disorders

Posted: Sep 14, 2023

My functional medicine doc has me taking 10,000 IU Vit D daily to keep my levels...

https://connect.mayoclinic.org/comment/845564/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Apr 19, 2023

Hi Lynn. I was having tingling and numbness in my lips. It felt weird when I...

https://connect.mayoclinic.org/comment/839738/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Apr 8, 2023

Hello. I'm 62 and was diagnosed a month ago with Jak2 and ET. Had my bone...

https://connect.mayoclinic.org/comment/774273/

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

Support Group: Blood Cancers & Disorders

Posted: Nov 17, 2022

I had bone pain in big toes 3 years before being diagnosed with ET Jak2. I've...

https://connect.mayoclinic.org/comment/1391430/

Discussion: Is foot/toe pain a symptom of increasing platelets in ET?

Support Group: Blood Cancers & Disorders

Posted: Sep 11, 2025

@1pearl Hi, I have thrombocythemia (JAK2 mutation), platelets more than 1 000 000, and also red...

https://connect.mayoclinic.org/comment/1499149/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Feb 6 2:25am

Hello and thank you very much for responding and for all of the useful articles and...

https://connect.mayoclinic.org/comment/820592/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 4, 2023

@toste I was also diagnosed with myelofibrosis and the JAK2 mutation about a year ago. I...

https://connect.mayoclinic.org/comment/1494172/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 30 11:32am

In 2018 I was diagnosed with PV, sadly after a stroke and two DVT’s while I...

https://connect.mayoclinic.org/comment/1395931/

Discussion: My wife tested positive for jak2 and has high platelet count

Support Group: Blood Cancers & Disorders

Posted: Sep 18, 2025

Hi Justin. Thank you so much! And thanks to the hematologist/oncologist for the information. This was...

https://connect.mayoclinic.org/comment/284538/

Discussion: Jak 2 and Waldenstrom's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Jan 11, 2020

@gjb1 - My EPO is high as well. In my case the high EPO makes sense,...

https://connect.mayoclinic.org/comment/231784/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jan 13, 2019

Patty, when my platelet count rose slowly & steadily over several years I was very worried...

https://connect.mayoclinic.org/comment/1063989/

Discussion: Platelets are too high: What can be done to find root cause?

Support Group: Blood Cancers & Disorders

Posted: May 7, 2024