Blood Cancers & Disorders Support Group

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Comments (342)

Erikaerika, I just looked at NIH.gov and as of 2020 the median survival age of people...

https://connect.mayoclinic.org/comment/799775/

Discussion: How did you make the final decision to begin HU protocol for ET?

Support Group: Blood Cancers & Disorders

Posted: Jan 21, 2023

Thank you , your post was a Godsend. After a down day yesterday with my husband’s...

https://connect.mayoclinic.org/comment/1252374/

Discussion: AML successful treatment

Support Group: Blood Cancers & Disorders

Posted: Mar 7 8:56am

Hi @casevin7 JAK2 is an acquired mutation so it is possible to develop it in the...

https://connect.mayoclinic.org/comment/870437/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jun 1, 2023

I am now 65 and have been taking Hydroxyurea for 10 years to keep my platelets...

https://connect.mayoclinic.org/comment/910025/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Aug 9, 2023

Hello @ettap and welcome to Connect. It is good to see that you have confirmed your...

https://connect.mayoclinic.org/comment/194256/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Mar 29, 2018

Hi @ruthiek519 , Happy belated Birthday despite getting the diagnosis none of us want. I think...

https://connect.mayoclinic.org/comment/1312721/

Discussion: Getting nowhere with current Hematologist

Support Group: Blood Cancers & Disorders

Posted: May 25 3:50pm

Yes . I had this for 10 1/2 years and used same medication until it no...

https://connect.mayoclinic.org/comment/50532/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Jun 2, 2017

Hi Nellieblue, My husband has been on Tamsulosin for his Myelofibrosis two capsules a day for...

https://connect.mayoclinic.org/comment/101841/

Discussion: CLL treatment that concentrates in shrinking the spleen without undergoing chemo

Support Group: Blood Cancers & Disorders

Posted: May 28, 2016

Hi @bmarkable. I believe the medication Dr. Tefferi was talking about in the video is Imetelstat....

https://connect.mayoclinic.org/comment/1257278/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 13 4:43pm

Interesting you mention this. Yes yes and yes. With it radiating to my knee conceded me...

https://connect.mayoclinic.org/comment/1341397/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 5 8:03am

@scottmatteo I, too, have myelofibrosis. diagnosed by Mayo almost 6 years ago. But at that time,...

https://connect.mayoclinic.org/comment/657916/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Nov 28, 2021

I don't recall if you mentioned using NAC or glutathione. Individually they offer important benefits. Together,...

https://connect.mayoclinic.org/comment/132659/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Sep 7, 2020

Hi, I agree that the whole person approach is better. I finally have a decent primary...

https://connect.mayoclinic.org/comment/1275734/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Apr 6 2:05pm

I am beginning to think my mom had this and no one told us. She lived...

https://connect.mayoclinic.org/comment/926244/

Discussion: PV and peripheral artery disease PAD

Support Group: Blood Cancers & Disorders

Posted: Sep 8, 2023

Hi @circawdm, The best my O/H could do with my current Kaiser Advantage plan is to...

https://connect.mayoclinic.org/comment/1316677/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: May 30 2:39pm

Hi Steve My case is similar to yours. I was treated with Hydroxyurea for7 yrs for...

https://connect.mayoclinic.org/comment/913626/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Aug 15, 2023

I think in the United States some insurance companies make you do step therapy…hydroxyurea first before...

https://connect.mayoclinic.org/comment/790422/

Discussion: New to Pegasys for ET - advice please!

Support Group: Blood Cancers & Disorders

Posted: Dec 30, 2022

@ettap , Great comment. Most importantly, because it pertains to me, as well!(!) Anyway, I have...

https://connect.mayoclinic.org/comment/652790/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Nov 10, 2021

I'm extremely grateful that they have a better diagnostic system now, and even more grateful that...

https://connect.mayoclinic.org/comment/892932/

Discussion: Essential Thrombocythemia (ET): foods, diet, nutrition?

Support Group: Blood Cancers & Disorders

Posted: Jul 9, 2023

My husband was diagnosed at 69, a year ago, with Primary Myelofibrosis including Jak2 mutation. A...

https://connect.mayoclinic.org/comment/693147/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Mar 26, 2022