Blood Cancers & Disorders Support Group

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Comments (1,103)

Just to add my two cents that may be helpful: My wife has recently been diagnosed...

https://connect.mayoclinic.org/comment/1152194/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Oct 5, 2024

Hi @tennis7777, welcome to Connect. I’m not a medical professional but from my experience of having...

https://connect.mayoclinic.org/comment/1011277/

Discussion: Polycythemia Vera and Nutritional Ketosis

Support Group: Blood Cancers & Disorders

Posted: Feb 7, 2024

Similar to you, I was diagnosed based on blood work, not symptoms. Platelets were a bit...

https://connect.mayoclinic.org/comment/1010600/

Discussion: Essential Thrombocythemia (ET): foods, diet, nutrition?

Support Group: Blood Cancers & Disorders

Posted: Feb 6, 2024

Thanks Eileen. I had terrible mouth sores with HU and went off for about a month...

https://connect.mayoclinic.org/comment/792213/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 4, 2023

You seem extremely responsive to Hydroxyurea (HU) if your platelets came down in only ten days....

https://connect.mayoclinic.org/comment/777871/

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

Support Group: Blood Cancers & Disorders

Posted: Nov 27, 2022

I was given the option for a bone marrow test and did some research and decided...

https://connect.mayoclinic.org/comment/1270620/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 31 6:45am

My hematologist submitted blood at a lab for 5 genetic tests after I suffered my 2nd...

https://connect.mayoclinic.org/comment/194258/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Mar 30, 2018

Ive had PV for 18 months, at least formally diagnosed ..I noticed my Red Cells increasing...

https://connect.mayoclinic.org/comment/1194832/

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

Support Group: Blood Cancers & Disorders

Posted: Dec 21, 2024

I can’t recall where I looked it up. Mostly hospital sites. My main question was how...

https://connect.mayoclinic.org/comment/1271996/

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

Support Group: Blood Cancers & Disorders

Posted: Apr 1 4:54pm

Hello ,I wish you a speedy recovery ,my doctor told me that I have PMF but...

https://connect.mayoclinic.org/comment/1044469/

Discussion: Anyone have information about late stages of primary myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Apr 2, 2024

I was diagnosed with ET (Jak2), about 2 years ago. My platelet count was 550 and...

https://connect.mayoclinic.org/comment/928760/

Discussion: Thrombocythemia and need neck surgery: Will surgery make it worse?

Support Group: Blood Cancers & Disorders

Posted: Sep 12, 2023

Wow, surprised to read that they did a bone biopsy immediately. My doctor said they can...

https://connect.mayoclinic.org/comment/892162/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jul 8, 2023

Yes, I can sure understand wanting a firm diagnosis before taking meds, and you are right...

https://connect.mayoclinic.org/comment/1220505/

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

Support Group: Blood Cancers & Disorders

Posted: Jan 24 10:26am

Sounds like Becky has been through quite a lot. I am looking at mitral valve repair,...

https://connect.mayoclinic.org/comment/1154916/

Discussion: Essential thrombocythemia: Interested in connecting with others

Support Group: Blood Cancers & Disorders

Posted: Oct 10, 2024

I take HU, 500 mg, 2x week, and I am fatigued. I just try to keep...

https://connect.mayoclinic.org/comment/975898/

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

Support Group: Blood Cancers & Disorders

Posted: Dec 6, 2023

Are you being seen by a hematologist or your GP? What are your platelets? From what...

https://connect.mayoclinic.org/comment/776839/

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

Support Group: Blood Cancers & Disorders

Posted: Nov 24, 2022

Additional symptoms I'm experiencing include: swollen lymph nodes on sides of neck and sore throat over...

https://connect.mayoclinic.org/comment/284522/

Discussion: Jak 2 and Waldenstrom's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Dec 5, 2019

Hi arecchie, I was diagnosed with ET (Jak2 mutation) in November 2022. Started with 500 mg...

https://connect.mayoclinic.org/comment/1248006/

Discussion: How long before side effects from Hydrea start?

Support Group: Blood Cancers & Disorders

Posted: Mar 1 11:09am

I have been on hydroxyurea for 10 months now after getting a diagnosis of ET Jak2.....My...

https://connect.mayoclinic.org/comment/918086/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Aug 24, 2023

Slightly different scenario but thought I'd pass it along. My 72 year old wife had a...

https://connect.mayoclinic.org/comment/1200307/

Discussion: Has anyone had a total knee replacement that also has JAK2?

Support Group: Blood Cancers & Disorders

Posted: Dec 30, 2024