Blood Cancers & Disorders Support Group

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Comments (1,382)

You must have so many questions! You might want to use the search bar at the...

https://connect.mayoclinic.org/comment/1244801/

Discussion: Like to know more. Just told I have Triple Negative MPN.

Support Group: Blood Cancers & Disorders

Posted: Feb 24, 2025

Hello lrkiesling@lrkiesling. I am so sorry for your feelings of uncertainty. I share your frustration. I...

https://connect.mayoclinic.org/comment/1549673/

Discussion: Primary Myelofibrosis: so unsure of everything, need answers

Support Group: Blood Cancers & Disorders

Posted: Apr 13 12:07pm

Hi @nyjean. Hopefully I can answer your question about PV and ET. Those two conditions, along...

https://connect.mayoclinic.org/comment/1066510/

Discussion: Polycythemia Vera or Essential Thrombocythemia ?

Support Group: Blood Cancers & Disorders

Posted: May 12, 2024

Hi Kevin -- Recently diagnosed with ET with numbers close to yours. Have you had genetic...

https://connect.mayoclinic.org/comment/1039634/

Discussion: Im 64 and my blood platelets have been in the low 530-550 range for yr

Support Group: Blood Cancers & Disorders

Posted: Mar 24, 2024

I’m 57 Jak2+ with PV and no other risks factors for clotting thus far so that’s...

https://connect.mayoclinic.org/comment/1025967/

Discussion: Anyone else find the side effects of Hydrea 500MG frightening?

Support Group: Blood Cancers & Disorders

Posted: Mar 2, 2024

Hi @tokyolin, I am following up on Lori’s comments to you. I was diagnosed a year...

https://connect.mayoclinic.org/comment/882028/

Discussion: Essential thrombocytosis with MPL mutation

Support Group: Blood Cancers & Disorders

Posted: Jun 20, 2023

I was diagnosed PV in April ‘22, with JAK2 gene. Bloodlettings and Hydroxurea were prescribed. The...

https://connect.mayoclinic.org/comment/793807/

Discussion: Any suggestions for chronic shortness of breath with PV?

Support Group: Blood Cancers & Disorders

Posted: Jan 8, 2023

I was originally diagnosed with ET based on a positive JAK2 bloid test. I asked the...

https://connect.mayoclinic.org/comment/194320/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Aug 2, 2019

Hi Meg and others, I have ET and I am also a triple negative. I have...

https://connect.mayoclinic.org/comment/1512303/

Discussion: Anyone else have ET (thrombocytosis) with no gene mutation?

Support Group: Blood Cancers & Disorders

Posted: Feb 22 6:02pm

I was 75 and noticed severe itching after swim/bath. PC was uninterested in elevated hematocrit(57), but...

https://connect.mayoclinic.org/comment/885884/

Discussion: I am curious: What symptoms did everyone have in the beginning for PV?

Support Group: Blood Cancers & Disorders

Posted: Jun 27, 2023

Hi @leanne1 Thank you so much for sharing your hemoglobin tester info with us! There are...

https://connect.mayoclinic.org/comment/878222/

Discussion: Diagnosed with PV: Anyone used a home hemoglobin testing kit?

Support Group: Blood Cancers & Disorders

Posted: Jun 14, 2023

Hello @katrink, While you’re waiting for other members with PV to comment on any difficulties they...

https://connect.mayoclinic.org/comment/1399546/

Discussion: Diagnosed with Polycythemia Vera in August. I was given Hdroxyurea

Support Group: Blood Cancers & Disorders

Posted: Sep 23, 2025

JAK2 Myelofibrosis I have been on Ojjarra for almost three months. It is a half dose...

https://connect.mayoclinic.org/comment/1210536/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 13, 2025

My doctor says platelets should be between 140 - 450. I have heard different ranges but...

https://connect.mayoclinic.org/comment/1029002/

Discussion: ET: What are acceptable platelet numbers?

Support Group: Blood Cancers & Disorders

Posted: Mar 7, 2024

I’m female, 63, with MPL mutation. My platelets were 1073 in February 2022, now 453. Pretty...

https://connect.mayoclinic.org/comment/1007243/

Discussion: Anyone else with ET have mutation in MPL gene?

Support Group: Blood Cancers & Disorders

Posted: Jan 31, 2024

Hi as I’ve recently been diagnosed with PV and have the JAK2 mutation I’m reading all...

https://connect.mayoclinic.org/comment/1437594/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Nov 13, 2025

They have differentiated treatment for CALR's slightly, and I'm hoping that all of us who were...

https://connect.mayoclinic.org/comment/1313362/

Discussion: Getting nowhere with current Hematologist

Support Group: Blood Cancers & Disorders

Posted: May 26, 2025

About 6 months ago a blood test showed very high platelet counts. Next, I tested positive...

https://connect.mayoclinic.org/comment/1236870/

Discussion: Jak2 positive, biopsy next: Does it mean I have blood cancer?

Support Group: Blood Cancers & Disorders

Posted: Feb 14, 2025

Recent update: I was diagnosed 3 years ago/ Jak2 mutation. I had already had a small...

https://connect.mayoclinic.org/comment/982523/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Dec 18, 2023

I was diagnosed with ET with JAK2 mutation a little over a year ago and even...

https://connect.mayoclinic.org/comment/1448598/

Discussion: Is Essential Thrombocythemia a blood disease or cancer?

Support Group: Blood Cancers & Disorders

Posted: Nov 27, 2025