Blood Cancers & Disorders Support Group

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Comments (1,382)

That's great that your doc sees you every three months at this beginning phase. Gives you...

https://connect.mayoclinic.org/comment/1117199/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Aug 3, 2024

Hi @jola13 Headaches are so miserable and it sounds like you have a doozy. I looked...

https://connect.mayoclinic.org/comment/896933/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jul 16, 2023

A quick synopsis of my situation… In late 2020 I felt a minor dizziness and my...

https://connect.mayoclinic.org/comment/810809/

Discussion: Your tips as I prepare for first phlebotomy

Support Group: Blood Cancers & Disorders

Posted: Feb 13, 2023

Good questions. I’m not a medical doctor. My career was at the diagnostic end (lab). Therefore,...

https://connect.mayoclinic.org/comment/981500/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Dec 16, 2023

Yes, I was diagnosed in May of 2022 but have had symptoms since 2019. I had...

https://connect.mayoclinic.org/comment/738411/

Discussion: When is hydroxurea usually added to treat polycythemia vera (PV)?

Support Group: Blood Cancers & Disorders

Posted: Aug 17, 2022

Not knowing is more stress than dealing with truth & reality. .I have had two bone...

https://connect.mayoclinic.org/comment/720769/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 24, 2022

My platelets were rising starting in 2017, finally I was diagnosed with ET Jak2 in 2020....

https://connect.mayoclinic.org/comment/1141953/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Sep 15, 2024

Did they do a molecular panel to determine which genes have mutated? The reason I ask...

https://connect.mayoclinic.org/comment/194333/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Aug 10, 2019

I have the JAK2 and SRSF2 mutations. I was diagnosed with MDS/MPN overlap with Thrombocytosis. Extremely...

https://connect.mayoclinic.org/comment/194316/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: May 9, 2019

Fatigue is a common symptom with all forms of Leukemia and MDS or MPN disorders. Hydrea...

https://connect.mayoclinic.org/comment/850175/

Discussion: Jak 2 Positive with Elevated Platelets: What symptoms do you have?

Support Group: Blood Cancers & Disorders

Posted: Apr 27, 2023

As I stated in my post, I thought there was something wrong with my brain due...

https://connect.mayoclinic.org/comment/812957/

Discussion: Your tips as I prepare for first phlebotomy

Support Group: Blood Cancers & Disorders

Posted: Feb 17, 2023

I’ve had ET w/Jak2 for 18 months. My functional medicine doc works w/my Heme doc (who...

https://connect.mayoclinic.org/comment/1094207/

Discussion: Any correlation between Essential Thrombocythemia & high B12?

Support Group: Blood Cancers & Disorders

Posted: Jun 25, 2024

I am + JAK2 and just had a biopsy and they still don't know for certain...

https://connect.mayoclinic.org/comment/194284/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jan 26, 2019

Hi, very sorry for delayed response, battled illness not related to PV. I would say both...

https://connect.mayoclinic.org/comment/1459316/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Dec 12, 2025

I have been taking daily 600mgs of HU for 6 yrs (Droxia formulation). When I started...

https://connect.mayoclinic.org/comment/1168197/

Discussion: How long before side effects from Hydrea start?

Support Group: Blood Cancers & Disorders

Posted: Nov 4, 2024

I’ve had high platelets in the 600-700 range for close to 20 yrs. It was never...

https://connect.mayoclinic.org/comment/811832/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Feb 15, 2023

I am 78 with ET JAK2, started taking HU 500 mg daily in June 2022. Started...

https://connect.mayoclinic.org/comment/790060/

Discussion: MGUS with Polycythemia Vera (PV)

Support Group: Blood Cancers & Disorders

Posted: Dec 29, 2022

Have you filed a lawsuit claim with the VA yet? You may be entitled to medical...

https://connect.mayoclinic.org/comment/194353/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jan 20, 2020

Not certain this is going to post as I still don’t have a password , so...

https://connect.mayoclinic.org/comment/767118/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Oct 29, 2022

Hello. You made me look up Chuvash. Interesting. I have PV/JAK2. So, you write you’ve had...

https://connect.mayoclinic.org/comment/1479523/

Discussion: Secondary polycythemia: What are the treatment options?

Support Group: Blood Cancers & Disorders

Posted: Jan 11 10:12am