Blood Cancers & Disorders Support Group

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Comments (1,392)

My Polycythemia Vera and JAK2 positive test and diagnosis was on Nov. 25, 2022. After starting...

https://connect.mayoclinic.org/comment/803537/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jan 29, 2023

@nypara66 Hi! Thank you for your advice. Unfortunately I did not test positive for Jak2 so...

https://connect.mayoclinic.org/comment/1466273/

Discussion: Diagnosed polycythemia vera at 26: Any young PV patients out there?

Support Group: Blood Cancers & Disorders

Posted: Dec 23, 2025

You may find that despite having the JAK2 mutation, your life may not be any noticeably...

https://connect.mayoclinic.org/comment/194269/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Dec 26, 2018

My brother and I both have the mutation courtesy of the JAK2 which resulted in no...

https://connect.mayoclinic.org/comment/1047855/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Apr 9, 2024

I have ET with JAK2 mutation. It took 22 weeks taking 500mg HU once daily to...

https://connect.mayoclinic.org/comment/1036856/

Discussion: Started Hydroxyurea: How long to see decrease in counts?

Support Group: Blood Cancers & Disorders

Posted: Mar 20, 2024

I have ET/Jak2. Low iron but I am not anemic. The fatigue did not start until...

https://connect.mayoclinic.org/comment/1017214/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Feb 17, 2024

My platelets numbers were similar to yours in January, plus blood work identified a Jak2 mutation....

https://connect.mayoclinic.org/comment/988747/

Discussion: Essential Thrombocytosis symptoms

Support Group: Blood Cancers & Disorders

Posted: Dec 30, 2023

Hi @jewelfaux. The JAK2 mutation can be discovered/diagnosed with blood work. It isn’t necessary to have...

https://connect.mayoclinic.org/comment/975772/

Discussion: Jak 2 mutations

Support Group: Blood Cancers & Disorders

Posted: Dec 6, 2023

I had platelets up to 600 and hemocrit top level to where they would take off...

https://connect.mayoclinic.org/comment/943780/

Discussion: Pros and Cons of JAK2 testing

Support Group: Blood Cancers & Disorders

Posted: Oct 7, 2023

I was diagnosed with MDS in 2021. In March 2023 my platelets shot up to over...

https://connect.mayoclinic.org/comment/846781/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Apr 21, 2023

Your hemo's dosing strategy is interesting, and I might ask mine about that. How often do...

https://connect.mayoclinic.org/comment/779191/

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

Support Group: Blood Cancers & Disorders

Posted: Nov 30, 2022

I was diagnosed with ET and was referred to the Mayo Clinic in Arizona. After a...

https://connect.mayoclinic.org/comment/1327678/

Discussion: Essential Thrombocythemia treatment with Besremi

Support Group: Blood Cancers & Disorders

Posted: Jun 15, 2025

We’ve been monitoring my platelets for 11 years. They are always above the normal of 450....

https://connect.mayoclinic.org/comment/1319552/

Discussion: High Platelets

Support Group: Blood Cancers & Disorders

Posted: Jun 3, 2025

What I learned talking with other patients and my doc: If you have the CALR mutation,...

https://connect.mayoclinic.org/comment/1136530/

Discussion: What about no treatment for ET?

Support Group: Blood Cancers & Disorders

Posted: Sep 5, 2024

Thank you so much for your helpful response. I used a lot of google as well...

https://connect.mayoclinic.org/comment/1036657/

Discussion: New - possible Polycythemia vera (PV)

Support Group: Blood Cancers & Disorders

Posted: Mar 19, 2024

Me, too. A routine blood test found high platelets, which led to a referral to a...

https://connect.mayoclinic.org/comment/974495/

Discussion: Jak 2 mutations

Support Group: Blood Cancers & Disorders

Posted: Dec 3, 2023

I have been on low dose Hydroxy for 2 months now - do notice small mouth...

https://connect.mayoclinic.org/comment/966488/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Nov 17, 2023

Hi milkweed, My hematologist recently suggested Anagrelide to me because I have had headaches taking Hydroxyurea....

https://connect.mayoclinic.org/comment/862257/

Discussion: Anagrelide: Do you switch? How to cover costs?

Support Group: Blood Cancers & Disorders

Posted: May 18, 2023

I was diagnosed in December of this past year. Same thing, Jak2 mutation. I tried some...

https://connect.mayoclinic.org/comment/845763/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Apr 19, 2023

Hi cowestwinds, I am 78 with ET JAK2. After starting Hydroxyurea 500 mg daily in June...

https://connect.mayoclinic.org/comment/792191/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 4, 2023