Blood Cancers & Disorders Support Group

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Comments (1,382)

Good morning, @paisleyshakell. From my personal experience of having an aggressive form of leukemia with three...

https://connect.mayoclinic.org/comment/1122731/

Discussion: Thrombocythemia JAK2 - is it ok to have an MRI with dye?

Support Group: Blood Cancers & Disorders

Posted: Aug 13, 2024

I’m 56 and started in Nov with one pill a day. When I reached 842 that...

https://connect.mayoclinic.org/comment/1014323/

Discussion: Essential Thrombocytosis: What amount of hydroxy do you take?

Support Group: Blood Cancers & Disorders

Posted: Feb 12, 2024

My husband was just told by the hematologist he was referred to that he has Jak2...

https://connect.mayoclinic.org/comment/328590/

Discussion: JAK2 Mutation, Low Iron and High Platelet count

Support Group: Blood Cancers & Disorders

Posted: Feb 16, 2021

@misty45 Thank you so very much for sharing your ET experience. My daughter ( age 39)...

https://connect.mayoclinic.org/comment/194272/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jan 20, 2019

Cristinia, I also feel lucky that of all cancers I could I acquired PV. My husband...

https://connect.mayoclinic.org/comment/1278598/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Apr 10, 2025

My lab (Portland, Maine) indicates normal range of platelets to be 158 - 429, Hematocrit 35...

https://connect.mayoclinic.org/comment/1502239/

Discussion: Any suggestions on what time of day is best for taking Hydroxyurea?

Support Group: Blood Cancers & Disorders

Posted: Feb 10 7:22am

Good morning, @tim376. You were very recently diagnosed with myelofibrosis, (MF) so I’m sure you have...

https://connect.mayoclinic.org/comment/1502334/

Discussion: Anyone have Myelofibrosis (CMS-HCC)?

Support Group: Blood Cancers & Disorders

Posted: Feb 10 9:17am

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 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

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 am ET JAK2+ and 79 years old. I too have experienced the sharp, sudden headaches....

https://connect.mayoclinic.org/comment/1286785/

Discussion: How long you can live taking Hydrea (Hydroxyurea)?

Support Group: Blood Cancers & Disorders

Posted: Apr 21, 2025

Hi, I found your post and was just wondering how you got to have bone marrow...

https://connect.mayoclinic.org/comment/1219760/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 23, 2025

Yes, some docs start patients on huge doses of HU if their platelets are over 1,000...

https://connect.mayoclinic.org/comment/1377250/

Discussion: Essential thrombocythemia (ET): When to start hydroxyurea (HU)?

Support Group: Blood Cancers & Disorders

Posted: Aug 23, 2025

My first meeting with an oncologist after an accurate diagnosis of Primary Mylofibrosis was disturbing. She...

https://connect.mayoclinic.org/comment/1313191/

Discussion: Primary Myelofibrosis: What is life going to be like now?

Support Group: Blood Cancers & Disorders

Posted: May 26, 2025

Welcome to this "new planet" @cmcj. To help you connect with others, I moved your post...

https://connect.mayoclinic.org/comment/891068/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jul 6, 2023

I'm also CALR. Started on 500 mg HU daily when platelets approached 800. Took a year...

https://connect.mayoclinic.org/comment/881192/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jun 19, 2023

I was diagnosed with ET at 37 with platelets at 890. I started on aspirin only...

https://connect.mayoclinic.org/comment/792965/

Discussion: Essential Thrombocythemia: Looking for information and support

Support Group: Blood Cancers & Disorders

Posted: Jan 6, 2023

there is a naturopathic drug called "lumbrokinase " old Chinese medicine. I am going to start...

https://connect.mayoclinic.org/comment/1021025/

Discussion: Essential Thrombocythemia: Making treatment decisions

Support Group: Blood Cancers & Disorders

Posted: Feb 23, 2024

I started out taking HU 1x week for a month, 2x week for 8 months, and...

https://connect.mayoclinic.org/comment/1006203/

Discussion: What are most common side effects when starting HU (Hydroxyurea)?

Support Group: Blood Cancers & Disorders

Posted: Jan 29, 2024