Blood Cancers & Disorders Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

1,176 total results

Comments (1,102)

I was wondering the same thing- that it took Jackie to do her own research. For...

https://connect.mayoclinic.org/comment/1195078/

Discussion: My mom has Polycythemia Vera: Can PV be managed without phlebotomies?

Support Group: Blood Cancers & Disorders

Posted: Dec 22, 2024

I’ve seen many who get there numbers down in the 500’s and are ok with that....

https://connect.mayoclinic.org/comment/764541/

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

Support Group: Blood Cancers & Disorders

Posted: Oct 23, 2022

@jsslmt53, welcome. We have many members who are living with Essential Thrombocythemia and talk about JAK2...

https://connect.mayoclinic.org/comment/782514/

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

Support Group: Blood Cancers & Disorders

Posted: Dec 8, 2022

I'm so sorry your mom is dealing with MF. Guessing she has the CALR or MPL...

https://connect.mayoclinic.org/comment/1069688/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: May 17, 2024

Just following up. My Jak2 was negative and my EPO was 5. I don't know what...

https://connect.mayoclinic.org/comment/852226/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 30, 2023

Is a bone marrow test necessary? I was diagnosed with ET through blood tests. I'm JAK2...

https://connect.mayoclinic.org/comment/827322/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 17, 2023

I have MDS/MPN with Thrombocytosis. Also JAK2 and SRSF2 positive. I take Hydroxyurea to reduce my...

https://connect.mayoclinic.org/comment/256907/

Discussion: Medication for JAK2

Support Group: Blood Cancers & Disorders

Posted: Jun 19, 2019

I am sorry you are going through so many issues. Since you are positive for JAK2...

https://connect.mayoclinic.org/comment/836053/

Discussion: Blood Cancer - JAK2 - Autoimmune- Confusion

Support Group: Blood Cancers & Disorders

Posted: Apr 2, 2023

No, it was not mentioned. I did have three different blood tests done which showed I...

https://connect.mayoclinic.org/comment/827610/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 17, 2023

I also suffer from low iron after many phlebotomies. I had an iron infusion one year...

https://connect.mayoclinic.org/comment/1225254/

Discussion: Polycythemia Vera and low iron

Support Group: Blood Cancers & Disorders

Posted: Jan 30 8:40am

Yes, my naturopath has me on Nattokinese, it’s similar but different. He works w/my heme doc....

https://connect.mayoclinic.org/comment/1017850/

Discussion: Concerned about medications for ET JAK2

Support Group: Blood Cancers & Disorders

Posted: Feb 18, 2024

My son is almost 47 and has been dealing with high platelet count 750,000 for about...

https://connect.mayoclinic.org/comment/194300/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Apr 5, 2019

Are you by chance taking testosterone, either by injection or a topical preparation? Polycythemia (but not...

https://connect.mayoclinic.org/comment/784089/

Discussion: Polycythemia Vera - Help getting Diagnosis

Support Group: Blood Cancers & Disorders

Posted: Dec 12, 2022

My hematologist just prescribed 500 mg of Hydrea every other day for me. My bone marrow...

https://connect.mayoclinic.org/comment/1305749/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: May 16 7:53pm

I’m wondering who tried the keto diet and how it worked. I started keto a year...

https://connect.mayoclinic.org/comment/775370/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Nov 20, 2022

Just because you have the JAK2 mutation it doesn't mean you cannot have other gene mutations....

https://connect.mayoclinic.org/comment/194366/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Feb 26, 2020

My hgb is around 16.8 and hct around 49 for the past 2 years. Jak2 is...

https://connect.mayoclinic.org/comment/1131134/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Aug 26, 2024

Welcome to the club! I, too, am cold intolerant and have Reynaulds (which mayor may not...

https://connect.mayoclinic.org/comment/855393/

Discussion: I have JAK2 ET and MPN: Anyone else have these symptoms?

Support Group: Blood Cancers & Disorders

Posted: May 6, 2023

I am JAK2 positive with ET and my platelets are still in the millions. I started...

https://connect.mayoclinic.org/comment/846777/

Discussion: Jak 2 Positive with Elevated Platelets: What symptoms do you have?

Support Group: Blood Cancers & Disorders

Posted: Apr 21, 2023

Good morning, @mags17 Polycythemia Vera is a blood condition where too many red blood cells are...

https://connect.mayoclinic.org/comment/919145/

Discussion: Polycythaemia Ruba Vera, Jak2 mutation & link to Sleep Apnea

Support Group: Blood Cancers & Disorders

Posted: Aug 26, 2023