Blood Cancers & Disorders Support Group

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Comments (1,384)

I have the Jak2 mutation when diagnosed Hematocrit was at 56 through Phlebs and Hydroxyurea my...

https://connect.mayoclinic.org/comment/1372633/

Discussion: What hematocrit (HCT) targets indicate phlebotomy needed for PVC?

Support Group: Blood Cancers & Disorders

Posted: Aug 17, 2025

I was diagnosed 3 years ago with secondary (non cancerous) PV. I do not have the...

https://connect.mayoclinic.org/comment/870096/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: May 31, 2023

Hi, I have Essential Thrombocythemia with JAK 2 mutation and perhaps these folks looking for answers...

https://connect.mayoclinic.org/comment/194318/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jul 19, 2019

I joined the JAK2 club in 2018. I have Polycythemia Vera which is a MPN sister...

https://connect.mayoclinic.org/comment/1184707/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Dec 5, 2024

Hi @jerrlin. In your case, you have the JAK2 mutation which caused the PV so it’s...

https://connect.mayoclinic.org/comment/870946/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jun 2, 2023

Wendy, physicians consider a number of factors when diagnosing PV because most diagnostic tests are not...

https://connect.mayoclinic.org/comment/890629/

Discussion: PV positive & Jak2 neg - good thing??

Support Group: Blood Cancers & Disorders

Posted: Jul 5, 2023

With higher platelet numbers you are putting yourself at a higher risk of pulmonary embolisms. From...

https://connect.mayoclinic.org/comment/869593/

Discussion: JAK2 V617F Essential Thrombocythemia: Hydroxyurea causes headaches

Support Group: Blood Cancers & Disorders

Posted: May 30, 2023

Is anyone having trouble with iron overload on hydrea. I have Jak2 positive pylocycthemia for a...

https://connect.mayoclinic.org/comment/1301393/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: May 10, 2025

I believe that no two peoples cases are the same and as the JAK2 mutation is...

https://connect.mayoclinic.org/comment/812512/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Feb 16, 2023

Hi @nolan, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this...

https://connect.mayoclinic.org/comment/194373/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Feb 1, 2021

Hello @lindaw123 I appreciate this thoughtful question. I did some research online and found the results...

https://connect.mayoclinic.org/comment/662346/

Discussion: Jak2 and Vitamin D3

Support Group: Blood Cancers & Disorders

Posted: Dec 14, 2021

"JAK 2 positive result only attributes to a 7% chance that it is the cause of...

https://connect.mayoclinic.org/comment/1281109/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 13, 2025

I’ve seen many who get there numbers down in the 500’s and are ok with that....

https://connect.mayoclinic.org/comment/764541/

Discussion: How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?

Support Group: Blood Cancers & Disorders

Posted: Oct 23, 2022

I'm so sorry your mom is dealing with MF. Guessing she has the CALR or MPL...

https://connect.mayoclinic.org/comment/1069688/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: May 17, 2024

Just following up. My Jak2 was negative and my EPO was 5. I don't know what...

https://connect.mayoclinic.org/comment/852226/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 30, 2023

Is a bone marrow test necessary? I was diagnosed with ET through blood tests. I'm JAK2...

https://connect.mayoclinic.org/comment/827322/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 17, 2023

@rivieramaya2009 I was at the Infusion Center for a phlebotomy (JAK2, PV)and the nurse asked me...

https://connect.mayoclinic.org/comment/1435935/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Nov 11, 2025

I have MDS/MPN with Thrombocytosis. Also JAK2 and SRSF2 positive. I take Hydroxyurea to reduce my...

https://connect.mayoclinic.org/comment/256907/

Discussion: Are you taking medication for JAK2? How does it affect you?

Support Group: Blood Cancers & Disorders

Posted: Jun 19, 2019

My brother and I have the JAK2 gene sibling mutation, and he could not handle the...

https://connect.mayoclinic.org/comment/1004869/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 27, 2024

Wondering why Xarelto? I'm in 70s diagnosed in 2019, on HU plus baby aspirin. My platelets...

https://connect.mayoclinic.org/comment/796538/

Discussion: High platelet count: What does this mean?

Support Group: Blood Cancers & Disorders

Posted: Jan 14, 2023