Blood Cancers & Disorders Support Group

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Comments (1,384)

Though I was diagnosed with ET, and JAK2 this summer, I still hesitate to take Hydrea...

https://connect.mayoclinic.org/comment/770145/

Discussion: People living with ET and taking Hydrea: Anybody setting records?

Support Group: Blood Cancers & Disorders

Posted: Nov 6, 2022

Hello everyone, I am recently diagnosed with ET and the Jak2 mutation. Cubby 13, I feel...

https://connect.mayoclinic.org/comment/1293524/

Discussion: Started Hydroxyurea 5 weeks . How long does the fatigue last?

Support Group: Blood Cancers & Disorders

Posted: Apr 30, 2025

I’m a 83-year-old female, diagnosed with lymphoma and myelofibrosis (JAK2 mutation) in June of 2024. I’ve...

https://connect.mayoclinic.org/comment/1252690/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 7, 2025

After reading that so many JAK2 people experience being weak or tired, and have balance issues,...

https://connect.mayoclinic.org/comment/194344/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Oct 20, 2019

Has anybody experienced being lightheaded/fainting, vomiting and sweating? It happened the second time to me yesterday....

https://connect.mayoclinic.org/comment/1519111/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Mar 4 6:12am

Thanks. It's helpful to hear your experience. Did your platelets stay stable over time and then...

https://connect.mayoclinic.org/comment/943016/

Discussion: Pros and Cons of JAK2 testing

Support Group: Blood Cancers & Disorders

Posted: Oct 6, 2023

I was just diagnosed with Jak2/ET and had a bone marrow biopsy that ruled out other...

https://connect.mayoclinic.org/comment/1193558/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Dec 19, 2024

Hmm, I think @1pearl mentioned that her platelet levels are dropping without meds and that she...

https://connect.mayoclinic.org/comment/1248005/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Mar 1, 2025

I am jak2 positive. On a low dose of Asa and Hydroxurea x 3 years. I...

https://connect.mayoclinic.org/comment/957213/

Discussion: JAK2 V617F positive, now what?

Support Group: Blood Cancers & Disorders

Posted: Nov 1, 2023

I have been taking 600mgs of HU(Droxia formulation) since PMF diagnosis in 2018. It has lowered...

https://connect.mayoclinic.org/comment/1087422/

Discussion: Is my treatment a bit aggressive?

Support Group: Blood Cancers & Disorders

Posted: Jun 15, 2024

Bone marrow biopsy is the only way to confirm Mylofibrosis. It diagnoses what level by measuring...

https://connect.mayoclinic.org/comment/929302/

Discussion: Bone Marrow Biopsy & Aspiration

Support Group: Blood Cancers & Disorders

Posted: Sep 13, 2023

I was diagnosed with the same jak2 positive and my platelets are in the 500’s. Hydro...

https://connect.mayoclinic.org/comment/929131/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 13, 2023

From my understanding PV doesn’t run in families. It’s usually caused by an acquired mutation in...

https://connect.mayoclinic.org/comment/1239444/

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

Support Group: Blood Cancers & Disorders

Posted: Feb 17, 2025

I've checked with AI ChatGBT...it gave a lot of info. Here is some of it... Why...

https://connect.mayoclinic.org/comment/1513662/

Discussion: Jak2 positive, biopsy next: Does it mean I have blood cancer?

Support Group: Blood Cancers & Disorders

Posted: Feb 24 12:49pm

Wow, Lynne....What an amazing amount of easy to understand information. My platelets have now been in...

https://connect.mayoclinic.org/comment/955755/

Discussion: Needing help understanding ET and how it affects my life

Support Group: Blood Cancers & Disorders

Posted: Oct 29, 2023

Hi Robert, Be patient with HU. I am 78 and my hematologist informs me that my...

https://connect.mayoclinic.org/comment/829989/

Discussion: Hydroxyurea side effects lessen over time?

Support Group: Blood Cancers & Disorders

Posted: Mar 22, 2023

Yes I’ve been to my local specialist hematologist and to a hematologist in Houston as well....

https://connect.mayoclinic.org/comment/825898/

Discussion: Persistently Elevated Platelets Fluctuating

Support Group: Blood Cancers & Disorders

Posted: Mar 14, 2023

Hi Jen— I’m in the same club. ET w/JAK2. Diagnosed last month. Platelets were 720 initially...

https://connect.mayoclinic.org/comment/1301134/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: May 10, 2025

So how was your ET, JAK2 Positive diagnosed? Did your Hematologist or Oncologist do a bone...

https://connect.mayoclinic.org/comment/194361/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Feb 3, 2020

I was told before I had the Jak2 positive that if it were Polycythemia secondary that...

https://connect.mayoclinic.org/comment/896033/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jul 15, 2023