Blood Cancers & Disorders Support Group

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Comments (951)

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’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

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

Good morning, @sudutoo. I hope you have your reading glasses on! You have a lot of...

https://connect.mayoclinic.org/comment/1050553/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Apr 14, 2024

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

Recently diagnosed in November with pv/et, jak2+. Originally on hydrox 1000 daily with phlebotomy x 3...

https://connect.mayoclinic.org/comment/821163/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Mar 5, 2023

I don't live in a big city, but when I got my PV diagnosis I got...

https://connect.mayoclinic.org/comment/870438/

Discussion: PV and fatigue

Support Group: Blood Cancers & Disorders

Posted: Jun 1, 2023

My platelets have been increasing since 2018 and are currently at 610. My bloodwork confirmed the...

https://connect.mayoclinic.org/comment/829902/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 21, 2023

New to this group. I've been diagnosed with an MPN ET with JAK2. Doctor has put...

https://connect.mayoclinic.org/comment/1192587/

Discussion: How fast do you start to feel hydroxyurea symptoms?

Support Group: Blood Cancers & Disorders

Posted: Dec 17, 2024

I just turned 67, and was diagnosed with ET JAK2 a few months ago. Although I’m...

https://connect.mayoclinic.org/comment/1196178/

Discussion: Anyone living with Essential Thrombocythemia with JAK2?

Support Group: Blood Cancers & Disorders

Posted: Dec 23, 2024

my plt also started increasing with covid vaccines . I have had bone marrow biopsy, JAK2...

https://connect.mayoclinic.org/comment/1170559/

Discussion: Do vaccines like MMR or TB tests affect Bone Marrow Biopsy findings?

Support Group: Blood Cancers & Disorders

Posted: Nov 9, 2024

What dosage have you been prescibed? ET patients usually only need very low dosages of hydrea....

https://connect.mayoclinic.org/comment/1172215/

Discussion: How long before side effects from Hydrea start?

Support Group: Blood Cancers & Disorders

Posted: Nov 12, 2024

Hi, I have ET JAK2, but am not taking HU due to my age and other...

https://connect.mayoclinic.org/comment/830670/

Discussion: Hydroxyurea side effects lessen over time?

Support Group: Blood Cancers & Disorders

Posted: Mar 23, 2023

Hi I was newly diagnosed with this and am waiting to start on medication. I am...

https://connect.mayoclinic.org/comment/821798/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 6, 2023

Were you originally diagnosed by extensive labs and a bone marrow biopsy? Are you seeing an...

https://connect.mayoclinic.org/comment/783396/

Discussion: High Platelets

Support Group: Blood Cancers & Disorders

Posted: Dec 10, 2022

Jackt00, To answer your question…when the headaches started I had some dizziness and a first ever...

https://connect.mayoclinic.org/comment/830153/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Mar 22, 2023

Hello, I have had PV with JAK2 for about 5 years. I work and live a...

https://connect.mayoclinic.org/comment/812063/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Feb 15, 2023

Hi Eileen, I have been on Pegasus for 7 weeks, at a dosage of 45 mcg...

https://connect.mayoclinic.org/comment/807552/

Discussion: High Platelets

Support Group: Blood Cancers & Disorders

Posted: Feb 7, 2023

Your platelet level must be fairly low if starting HU is being left up to you....

https://connect.mayoclinic.org/comment/995371/

Discussion: What are pros of hydroxyurea vs other methods of lowering platelets?

Support Group: Blood Cancers & Disorders

Posted: Jan 11, 2024