Blood Cancers & Disorders Support Group | Page 20

People with ET who are on hydroxyurea - I have ET JAK 2, dx in March...

https://connect.mayoclinic.org/comment/1551358/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Apr 15 3:31pm

@rivieramaya2009 Good evening! I am also wondering if anyone can see and read our posts !...

https://connect.mayoclinic.org/comment/1421354/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 22, 2025

Everyone, I want to start by saying thank you all. I have been in Connect for...

https://connect.mayoclinic.org/comment/1549655/

Discussion: My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Support Group: Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Posted: Apr 13 11:54am

Sorry you are going through this time of uncertainty, Lisa. The uncertainty is worse than the...

https://connect.mayoclinic.org/comment/1165789/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 31, 2024

I was diagnosed with ET when I was 50. My platelet level was successfully controlled with...

https://connect.mayoclinic.org/comment/1327870/

Discussion: Stem Cell Replacement

Support Group: Blood Cancers & Disorders

Posted: Jun 15, 2025

@nohrt4me: I was diagnosed with ET when I was 50 with JAK2. My platelet level was...

https://connect.mayoclinic.org/comment/1329234/

Discussion: Starting 17th year with ET. What's ahead?

Support Group: Blood Cancers & Disorders

Posted: Jun 17, 2025

Hi @oliviamitza Welcome to Mayo Connect. I’m so sorry to hear that your mom’s blood condition...

https://connect.mayoclinic.org/comment/1505453/

Discussion: Polycythemia Vera: What is next when treatment stops working?

Support Group: Blood Cancers & Disorders

Posted: Feb 14 9:32am

@djlom15 we are actively looking for a way my husband can "dump" but it's rather expensive...

https://connect.mayoclinic.org/comment/1565657/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: May 3 1:57pm

@klm1235567 I’m 72 and was Diagnosed three years ago with PV and take 500mg Hydroxy urea...

https://connect.mayoclinic.org/comment/1562491/

Discussion: Polycythemia Vera and low iron

Support Group: Blood Cancers & Disorders

Posted: Apr 29 10:32am

On Wed, Apr 29, 2026 at 12:02 PM Mayo Clinic Connect < nf+8a3dbe8f+115560861@n1.hubapplication.com> wrote: > ##...

https://connect.mayoclinic.org/comment/1562624/

Discussion: Polycythemia Vera and low iron

Support Group: Blood Cancers & Disorders

Posted: Apr 29 1:30pm

My husband has Jak2 and was a poor responder to Hydroxyurea and Jakifi. His hematologist suggested...

https://connect.mayoclinic.org/comment/1564389/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: May 1 7:00pm

I have the same problem my marrow isn’t producing that is when after aBMB was done...

https://connect.mayoclinic.org/comment/1581218/

Discussion: Has anyone had a low platelet count of just 1?

Support Group: Blood Cancers & Disorders

Posted: 17 hours ago

Sorry for rambling, but by sharing my experience I hope to provide some insight and respond...

https://connect.mayoclinic.org/comment/684686/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Feb 26, 2022

Good morning! Well, gosh, that’s not the news you wanted with the Jakafi not doing the...

https://connect.mayoclinic.org/comment/703859/

Discussion: My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Support Group: Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Posted: Apr 29, 2022

I was diagnosed with myelofibrosis in 2014.comfirmed with a Jak2 DNA deviation test . Up until...

https://connect.mayoclinic.org/comment/1527906/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 15 11:35pm

I have Myelofibrosis and I'm on Jakifi. I might have to have some surgery (waiting on...

https://connect.mayoclinic.org/comment/1554053/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Apr 19 6:11am

@gaildj thank you. just did blood work yesterday so that’s 4 weeks after taking 20 mg...

https://connect.mayoclinic.org/comment/1552747/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 17 10:37am

I too just got diagnosed with a sense ET/primary myeloid fibrosis with CALR mutation. Did bone...

https://connect.mayoclinic.org/comment/1551437/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 15 5:29pm

My dr wants to start me on Jackafi, but I can’t afford the large co pay....

https://connect.mayoclinic.org/comment/994721/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Jan 9, 2024

That is the same message I got. No treatment except aspirin unless platelets are over a...

https://connect.mayoclinic.org/comment/914130/

Discussion: Male 65 year old farmer with thrombocythemia

Support Group: Blood Cancers & Disorders

Posted: Aug 16, 2023