Blood Cancers & Disorders Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

1,483 total results

Comments (1,382)

I had platelets up to 600 and hemocrit top level to where they would take off...

https://connect.mayoclinic.org/comment/943780/

Discussion: Pros and Cons of JAK2 testing

Support Group: Blood Cancers & Disorders

Posted: Oct 7, 2023

I was diagnosed with MDS in 2021. In March 2023 my platelets shot up to over...

https://connect.mayoclinic.org/comment/846781/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Apr 21, 2023

Your hemo's dosing strategy is interesting, and I might ask mine about that. How often do...

https://connect.mayoclinic.org/comment/779191/

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

Support Group: Blood Cancers & Disorders

Posted: Nov 30, 2022

I was diagnosed with ET and was referred to the Mayo Clinic in Arizona. After a...

https://connect.mayoclinic.org/comment/1327678/

Discussion: Essential Thrombocythemia treatment with Besremi

Support Group: Blood Cancers & Disorders

Posted: Jun 15, 2025

We’ve been monitoring my platelets for 11 years. They are always above the normal of 450....

https://connect.mayoclinic.org/comment/1319552/

Discussion: High Platelets

Support Group: Blood Cancers & Disorders

Posted: Jun 3, 2025

What I learned talking with other patients and my doc: If you have the CALR mutation,...

https://connect.mayoclinic.org/comment/1136530/

Discussion: What about no treatment for ET?

Support Group: Blood Cancers & Disorders

Posted: Sep 5, 2024

I (75 yr) was diagnosed with ET a couple of weeks ago and was started on...

https://connect.mayoclinic.org/comment/1395975/

Discussion: Living with ET

Support Group: Blood Cancers & Disorders

Posted: Sep 18, 2025

Thank you so much for your helpful response. I used a lot of google as well...

https://connect.mayoclinic.org/comment/1036657/

Discussion: New - possible Polycythemia vera (PV)

Support Group: Blood Cancers & Disorders

Posted: Mar 19, 2024

Me, too. A routine blood test found high platelets, which led to a referral to a...

https://connect.mayoclinic.org/comment/974495/

Discussion: Jak 2 mutations

Support Group: Blood Cancers & Disorders

Posted: Dec 3, 2023

I have been on low dose Hydroxy for 2 months now - do notice small mouth...

https://connect.mayoclinic.org/comment/966488/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Nov 17, 2023

Hi milkweed, My hematologist recently suggested Anagrelide to me because I have had headaches taking Hydroxyurea....

https://connect.mayoclinic.org/comment/862257/

Discussion: Anagrelide: Do you switch? How to cover costs?

Support Group: Blood Cancers & Disorders

Posted: May 18, 2023

I was diagnosed in December of this past year. Same thing, Jak2 mutation. I tried some...

https://connect.mayoclinic.org/comment/845763/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Apr 19, 2023

Hi cowestwinds, I am 78 with ET JAK2. After starting Hydroxyurea 500 mg daily in June...

https://connect.mayoclinic.org/comment/792191/

Discussion: High platelets, Jak2, ET, and pre-fib new diagnosis

Support Group: Blood Cancers & Disorders

Posted: Jan 4, 2023

I have posted before about having JAK2 mutation - I have been followed by Hemo-oncologist for...

https://connect.mayoclinic.org/comment/975372/

Discussion: Jak 2 mutations

Support Group: Blood Cancers & Disorders

Posted: Dec 5, 2023

Hi Lorne…welcome to the site, Are you taking it with a full glass of water? Are...

https://connect.mayoclinic.org/comment/792340/

Discussion: Any recommendations for ongoing mild headaches with Hydroxyurea?

Support Group: Blood Cancers & Disorders

Posted: Jan 4, 2023

I didn't like varying my HU dosage from 500mgs to 1000mgs from day to day; I...

https://connect.mayoclinic.org/comment/1148733/

Discussion: Need help newly diagnosed with a high platelet count and the JAK2 gene

Support Group: Blood Cancers & Disorders

Posted: Sep 28, 2024

Polycythemia vera (PV) is primarily classified as a blood disorder, but it has characteristics of a...

https://connect.mayoclinic.org/comment/1114380/

Discussion: Been struggling with Polycythemia Vera for 2 years

Support Group: Blood Cancers & Disorders

Posted: Jul 30, 2024

Thank you I am looking into many things at the moment, perhaps a clinical trial for...

https://connect.mayoclinic.org/comment/50502/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Jul 17, 2011

Hi @winmil99, Many medications have a rebound effect if stopped abruptly. The same goes for HU...

https://connect.mayoclinic.org/comment/1038999/

Discussion: Started Hydroxyurea: How long to see decrease in counts?

Support Group: Blood Cancers & Disorders

Posted: Mar 23, 2024

@roughanne Hello. I was diagnosed with JAK2/PV almost 6 years ago. I’m 78 soon. Started on...

https://connect.mayoclinic.org/comment/1437600/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Nov 13, 2025