Blood Cancers & Disorders Support Group

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Comments (1,382)

I have the typical high and low blood count concerns that most myelofibrosis patients deal with,...

https://connect.mayoclinic.org/comment/1426293/

Discussion: Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?

Support Group: Blood Cancers & Disorders

Posted: Oct 29, 2025

My comment was somewhat vague. I had my first visit with hematologist/oncologist that diagnosed Essential Thrombocytosis...

https://connect.mayoclinic.org/comment/1312651/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: May 25, 2025

Hi, I'm 79 yr old female, on HU (500 mg daily) for a couple of years...

https://connect.mayoclinic.org/comment/1514200/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Feb 25 8:34am

Yes my husband had the JAK2 test after his platelets were in the 800's. And JAK2...

https://connect.mayoclinic.org/comment/1009781/

Discussion: How bad is a diagnosis of Polycythemia Vera? What to expect?

Support Group: Blood Cancers & Disorders

Posted: Feb 5, 2024

So glad the HU worked fast for you at that low dose! Re the genetic tests,...

https://connect.mayoclinic.org/comment/1002803/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 24, 2024

In response to @Lindaw123 - I would think Vit D3 would only have an adverse reaction...

https://connect.mayoclinic.org/comment/800883/

Discussion: Jak2 and Vitamin D3

Support Group: Blood Cancers & Disorders

Posted: Jan 24, 2023

Sounds like Essential Thrombocythemia (ET) which is one of the MPN diseases. I was originally diagnosed...

https://connect.mayoclinic.org/comment/328553/

Discussion: JAK2 Mutation, Low Iron and High Platelet count

Support Group: Blood Cancers & Disorders

Posted: Nov 25, 2020

Hi Lisa, I’m sorry you’re going through this. I know how scary it can be. I...

https://connect.mayoclinic.org/comment/1162415/

Discussion: JAK2 Mutation and enlarged spleen: What might it mean?

Support Group: Blood Cancers & Disorders

Posted: Oct 25, 2024

I have taken Bcomplex since 1970 Recently my dr told me to lower the dose to...

https://connect.mayoclinic.org/comment/1031730/

Discussion: Jak2 and Vitamin D3

Support Group: Blood Cancers & Disorders

Posted: Mar 11, 2024

I have JAK2+ ET and I've never had side effects from Hydrea in the 30 years...

https://connect.mayoclinic.org/comment/194375/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Feb 4, 2021

@jackiecarey My husband is dealing with the same issues. Your information was very insightful. I have...

https://connect.mayoclinic.org/comment/1401477/

Discussion: Diagnosed with Polycythemia Vera in August. I was given Hdroxyurea

Support Group: Blood Cancers & Disorders

Posted: Sep 25, 2025

I had a similar situation caused by taking prescribed testosterone. I am JAK2 negative. High hemoglobin...

https://connect.mayoclinic.org/comment/889816/

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

Support Group: Blood Cancers & Disorders

Posted: Jul 4, 2023

I am in the same situation. I have all the symptoms but am JAK2 negative. It's...

https://connect.mayoclinic.org/comment/886516/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 28, 2023

I have Polycythemia Vera Jak2. I all of a sudden have my platelets go up and...

https://connect.mayoclinic.org/comment/1087185/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jun 15, 2024

Hi @dale1k I am amazed at your high dose of HU since you say your RBC...

https://connect.mayoclinic.org/comment/1078783/

Discussion: Is my treatment a bit aggressive?

Support Group: Blood Cancers & Disorders

Posted: Jun 1, 2024

Hi group, I had a Jak2 that came back positive. From what I understand anything over...

https://connect.mayoclinic.org/comment/1140546/

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

Support Group: Blood Cancers & Disorders

Posted: Sep 12, 2024

@preacherswife1977 Hi I have ET and the JAK2. Still learning lots. I had lots of joint...

https://connect.mayoclinic.org/comment/1540779/

Discussion: Essential Thrombocytosis: What amount of hydroxy do you take?

Support Group: Blood Cancers & Disorders

Posted: Apr 2 12:08am

Those of us with the JAK2 mutation, who have also been diagnosed with a blood disorder...

https://connect.mayoclinic.org/comment/836188/

Discussion: Blood Cancer - JAK2 - Autoimmune- Confusion

Support Group: Blood Cancers & Disorders

Posted: Apr 2, 2023

There seems to be a correlation with chromosome mutation(s) one of which is referred to as...

https://connect.mayoclinic.org/comment/766919/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 29, 2022

This is where it gets confusing. The low end of our lab reference range for EPO...

https://connect.mayoclinic.org/comment/745889/

Discussion: Polycythemia: Primary or Secondary?

Support Group: Blood Cancers & Disorders

Posted: Sep 5, 2022