Blood Cancers & Disorders Support Group

@princess86, yes, ours says the same. He strongly states that calling ET cancer is a thing...

https://connect.mayoclinic.org/comment/1558386/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Apr 24 9:52am

Hi @patty1962 Welcome to Connect. Thank you for joining in and sharing your involvement with the...

https://connect.mayoclinic.org/comment/1572896/

Discussion: Is anyone involved in clinical trials for ET, specifically for CALR?

Support Group: Blood Cancers & Disorders

Posted: May 12 10:02am

Yes it is a cancer drug but also treats ET by reducing blood platelets. My doctor...

https://connect.mayoclinic.org/comment/1556577/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Apr 22 7:29am

Dad had ET with visual distortions with ET, which he described as blurred vision and loss...

https://connect.mayoclinic.org/comment/1556537/

Discussion: Essential Thrombocythemia JAK2 symptoms of dizziness/vision distortion

Support Group: Blood Cancers & Disorders

Posted: Apr 22 6:43am

@kearleyhagey, welcome. How are you doing on hydroxyurea? Are you new to ET?

https://connect.mayoclinic.org/comment/1555642/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Apr 20 8:20pm

@dewz13 I'd say 98% of us are the first patient with ET our PCPs has ever...

https://connect.mayoclinic.org/comment/1558313/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Apr 24 8:58am

I am in the JNJ-88549968 trial for ET/Myelofibrosis caused by the mutations in the CALR gene.

https://connect.mayoclinic.org/comment/1570736/

Discussion: Is anyone involved in clinical trials for ET, specifically for CALR?

Support Group: Blood Cancers & Disorders

Posted: May 9 3:26pm

@swalex This is definitely something dwilson could ask the Red Cross about. I believe she'll be...

https://connect.mayoclinic.org/comment/1564626/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: May 2 8:03am

@janemc I’m not convinced by that argument, as Essential thrombocythemia (ET) is not contagious and cannot...

https://connect.mayoclinic.org/comment/1564791/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: May 2 10:43am

Question along this line. I’m new to this ET thing. (Diagnosed with ET/Jak2…. Are there any...

https://connect.mayoclinic.org/comment/1544709/

Discussion: Is it okay to take B12 with essential thrombocythemia (ET)?

Support Group: Blood Cancers & Disorders

Posted: Apr 7 8:58am

@bluehorse Yes, my hemo also recommended taking hydroxyurea at night. Just curious what your platelet swings...

https://connect.mayoclinic.org/comment/1569558/

Discussion: Fatigue and Frustration with CALR ET

Support Group: Blood Cancers & Disorders

Posted: May 8 8:06am

@sarahgault Fatigue and headaches may be symptoms of ET. And having some good days, some less...

https://connect.mayoclinic.org/comment/1554917/

Discussion: Side effects of hydroxyurea

Support Group: Blood Cancers & Disorders

Posted: Apr 20 5:12am

@loribmt Thanks. Looks like the mitral valve people live in this group, so I am following:...

https://connect.mayoclinic.org/comment/1561961/

Discussion: ET CALR looking at heart surgery

Support Group: Blood Cancers & Disorders

Posted: Apr 28 3:22pm

Thanks for the encouragement, everyone. One of the tests ordered as pre-op assessment is an echogram...

https://connect.mayoclinic.org/comment/1562521/

Discussion: ET CALR looking at heart surgery

Support Group: Blood Cancers & Disorders

Posted: Apr 29 11:06am

@eloise999 I too have Sjogrens and ET. Take HU and baby aspirin daily but am constantly...

https://connect.mayoclinic.org/comment/1569169/

Discussion: Anyone with Essential Thrombocythemia & Sjogrens or autoimmune?

Support Group: Blood Cancers & Disorders

Posted: May 7 3:21pm

Issues with our eyes are scary for sure. To offer a quick (not necessarily final) answer...

https://connect.mayoclinic.org/comment/1556601/

Discussion: Essential Thrombocythemia JAK2 symptoms of dizziness/vision distortion

Support Group: Blood Cancers & Disorders

Posted: Apr 22 7:51am

In my research after receiving an ET diagnosis, I've read that the "average" life expectancy of...

https://connect.mayoclinic.org/comment/1018305/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Feb 19, 2024

@nohrt4me thank you for sharing your experience with ET. It is helpful and encouraging to learn...

https://connect.mayoclinic.org/comment/1555930/

Discussion: Anyone diagnosed with Essential Thrombocythemia (ET) with CALR?

Support Group: Blood Cancers & Disorders

Posted: Apr 21 8:39am

I have ET-CALR and am intolerant to Hydroxyurea. I am waiting to see if I will...

https://connect.mayoclinic.org/comment/1570921/

Discussion: Is anyone involved in clinical trials for ET, specifically for CALR?

Support Group: Blood Cancers & Disorders

Posted: May 9 9:38pm

Most ET patients live a normal life span. My dad had it and lived to be...

https://connect.mayoclinic.org/comment/1525738/

Discussion: Newly Diagnosed Essential Thrombocytosis

Support Group: Blood Cancers & Disorders

Posted: Mar 13 7:05am