Blood Cancers & Disorders Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

369 total results

Comments (339)

I was recently diagnosed with Mylofibrosis also. My hematologist has recommended that I have a Stem...

https://connect.mayoclinic.org/comment/1103286/

Discussion: What are treatments for myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 10, 2024

Oh thank you so much🙏. Wow 13 biopsies,What a great fierce fighter you are !❤️ Yeah...

https://connect.mayoclinic.org/comment/1022596/

Discussion: Polycythemia & Bone marrow Disorders screening

Support Group: Blood Cancers & Disorders

Posted: Feb 25, 2024

Hi @wellness3070, Unfortunately, research shows that muscle weakness can be one of the side effects; however,...

https://connect.mayoclinic.org/comment/132605/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 7, 2017

I have had Pilycthemia Vera for almost 20 years. It’s now has changed to Myelofbrosis. Just...

https://connect.mayoclinic.org/comment/1098999/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jul 4, 2024

I, too, have Myelofibrossis. I started Ojarra 100mg 4 months ago due to spleen discomfort. That...

https://connect.mayoclinic.org/comment/1252322/

Discussion: Myelofibrosis, Ojjaara and anemia

Support Group: Blood Cancers & Disorders

Posted: Mar 7 8:04am

I had Polycythemia Vera almost 20 years. Was taking Hydrea and it was working for me....

https://connect.mayoclinic.org/comment/1114732/

Discussion: Been struggling with Polycythemia Vera for 2 years

Support Group: Blood Cancers & Disorders

Posted: Jul 30, 2024

I took Vonjo for my enlarged spleen which was seconday to my myelodysplasia with myeloftbrosis. Really...

https://connect.mayoclinic.org/comment/1082842/

Discussion: My mother diagnosed with Myelofibrosis: Episodes of abdominal pain

Support Group: Blood Cancers & Disorders

Posted: Jun 8, 2024

I worked for 40 + years in Cytogenetics. In our field chromosomes are listed as “normal”...

https://connect.mayoclinic.org/comment/1074264/

Discussion: Chromosomes positive

Support Group: Blood Cancers & Disorders

Posted: May 25, 2024

I just went from blood work monthly to every three months. I think either God is...

https://connect.mayoclinic.org/comment/986088/

Discussion: Myelodysplastic syndromes (MDS): When do you need to start treatment?

Support Group: Blood Cancers & Disorders

Posted: Dec 24, 2023

I was just diagnosed in Sept. 2022 (Hospitalized Sept 22-30 due to cellulitis) My numbers were...

https://connect.mayoclinic.org/comment/795740/

Discussion: Polycythemia Vera: Just been diagnosed

Support Group: Blood Cancers & Disorders

Posted: Jan 12, 2023

Some symptoms have included fatigue, suseptability to infections, minor bruising , anemia, and frequent pre cancer...

https://connect.mayoclinic.org/comment/50534/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Jun 13, 2017

I was treated for high platelets for years,About three years I was diagnosed with myelofibroma by...

https://connect.mayoclinic.org/comment/132601/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Jan 6, 2017

I've been on anagrelide for 40 years with out a problem till this year & now...

https://connect.mayoclinic.org/comment/1102252/

Discussion: Platelets are too high: What can be done to find root cause?

Support Group: Blood Cancers & Disorders

Posted: Jul 9, 2024

I had ET for over 17 years. I was diagnosed at age 45. After the first...

https://connect.mayoclinic.org/comment/957613/

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

Support Group: Blood Cancers & Disorders

Posted: Nov 1, 2023

And complaining? Lol. Seriously, it Could be an enlarged spleen which sits above your stomach making...

https://connect.mayoclinic.org/comment/132651/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Aug 2, 2020

I agree that there are many unknowns about MF, even despite all the advances in research...

https://connect.mayoclinic.org/comment/957597/

Discussion: Anyone want to talk about Myelofibrosis?

Support Group: Blood Cancers & Disorders

Posted: Nov 1, 2023

Hi, I have Essential Thrombocythemia with JAK 2 mutation and perhaps these folks looking for answers...

https://connect.mayoclinic.org/comment/194318/

Discussion: JAK2 Mutation - Effects and Questions

Support Group: Blood Cancers & Disorders

Posted: Jul 19, 2019

Hello @jaylevel1, welcome to Connect. It is my understanding, and I am not a medical professional,...

https://connect.mayoclinic.org/comment/226228/

Discussion: Myelodysplastic Syndrome (MDS): how to increase red blood cells?

Support Group: Blood Cancers & Disorders

Posted: Nov 19, 2018

When was his last blood test? Red platlet count ? White cell count? Where is pain...

https://connect.mayoclinic.org/comment/50521/

Discussion: Myelofibrosis w/ JAK2 mutation

Support Group: Blood Cancers & Disorders

Posted: Apr 27, 2017