Blood Cancers & Disorders Support Group

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Comments (527)

2 weeks ago diagnosed with CMML 1 with Myelofibrosis 3+/3, after my 3rd Bone Marrow Aspiration...

https://connect.mayoclinic.org/comment/1509609/

Discussion: MDS-CMML-1: Anyone dealing with pruritus (itching)?

Support Group: Blood Cancers & Disorders

Posted: Feb 19 10:30am

Hi @ebertolis , It is nice to meet you. For me with CALR 1 mutation and...

https://connect.mayoclinic.org/comment/1499349/

Discussion: New to Hydrea for ET

Support Group: Blood Cancers & Disorders

Posted: Feb 6 9:48am

You didn't indicate how high her platelet count was. Mine started at 1.4 million and in...

https://connect.mayoclinic.org/comment/1395918/

Discussion: My wife tested positive for jak2 and has high platelet count

Support Group: Blood Cancers & Disorders

Posted: Sep 18, 2025

Update. Good morning. I was diagnosed 2 1/2 years ago. At the time, both the diagnosis...

https://connect.mayoclinic.org/comment/1369631/

Discussion: Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia

Support Group: Blood Cancers & Disorders

Posted: Aug 13, 2025

I just returned from my first 6 month check up at Moffitt Cancer Center near where...

https://connect.mayoclinic.org/comment/1258442/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 15, 2025

Everyone, I want to start by saying thank you all. I have been in Connect for...

https://connect.mayoclinic.org/comment/1549655/

Discussion: My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Support Group: Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Posted: Apr 13 11:54am

Unfortunately I’m not a pilot 😂,you can say I’m an airline ground dispatcher pilot ,I don’t...

https://connect.mayoclinic.org/comment/1022506/

Discussion: Polycythemia & Bone marrow Disorders screening

Support Group: Blood Cancers & Disorders

Posted: Feb 25, 2024

Hello Pamdg I am very surprised that you were on JAKAFI FOR FIVE YEARS!! I was...

https://connect.mayoclinic.org/comment/1434535/

Discussion: JAKAFI anyone! I've been on it for 5 years

Support Group: Blood Cancers & Disorders

Posted: Nov 9, 2025

Hi chrisatwell I am 65 and was diagnosed with ET on January 10, 2025 which my...

https://connect.mayoclinic.org/comment/1267651/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Mar 26, 2025

@apr931 Hi there! I wanted to chime in on your question regarding the number 32. I...

https://connect.mayoclinic.org/comment/231785/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Feb 7, 2019

@davi0937 After converting to Myelofibrosis from ET, I was having to have frequent blood transfusions (about...

https://connect.mayoclinic.org/comment/1378392/

Discussion: Primary Myelofibrosis with JAK2: Anyone have Ojjaara (momelotinib)?

Support Group: Blood Cancers & Disorders

Posted: Aug 24, 2025

Hi everyone, I'm Bonnie and I have MDS/MPN with Myelofibrosis 3. I live in Southern Oregon...

https://connect.mayoclinic.org/comment/1322924/

Discussion: My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Support Group: Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Posted: Jun 8, 2025

Thank you to those who shared their story. It is quite evident that I need a...

https://connect.mayoclinic.org/comment/1348792/

Discussion: Question about how you each received your diagnosis of MPN

Support Group: Blood Cancers & Disorders

Posted: Jul 15, 2025

My blood disorder was initially diagnosed as essential thrombocythemia but was later changed to myelofibrosis. My...

https://connect.mayoclinic.org/comment/1091333/

Discussion: Has anyone had experience with Jakafi?

Support Group: Blood Cancers & Disorders

Posted: Jun 21, 2024

You have elevate number of thrombocytes, also known as platelets, due to a cancer gene mutation...

https://connect.mayoclinic.org/comment/980340/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Dec 14, 2023

I was started on HU in November to lower platelets, but have experienced extreme fatigue, shortness...

https://connect.mayoclinic.org/comment/840955/

Discussion: Prefibrotic Myelofibrosis: Diagnosis Favors Essential Thrombocythemia

Support Group: Blood Cancers & Disorders

Posted: Apr 10, 2023

Hi...I have a condition called Myeloid/lymphoid neoplasms with PCM1-JAK2. My first indication of something wrong was...

https://connect.mayoclinic.org/comment/132623/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: May 7, 2020

Hi @tamlyn74, I had platelets similar to yours on my routine first time lab with new...

https://connect.mayoclinic.org/comment/1321000/

Discussion: Very anxious about bone marrow biopsy

Support Group: Blood Cancers & Disorders

Posted: Jun 5, 2025

After my JAK2 was found my O/H ordered a bone marrow biopsy which could be done...

https://connect.mayoclinic.org/comment/1270695/

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

Support Group: Blood Cancers & Disorders

Posted: Mar 31, 2025

I was diagnosed with ET and put on 500 mg a day to lower platelets from...

https://connect.mayoclinic.org/comment/1081405/

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

Support Group: Blood Cancers & Disorders

Posted: Jun 5, 2024

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