In this episode, we speak with Mary Wells, who was diagnosed with primary myelofibrosis in 2018, a rare blood cancer that falls under the umbrella of myeloproliferative neoplasms (MPN). Mary walks us through her journey, from the side effects and emotional toll of cancer to finding the right treatment that allowed her to reclaim her life.

Mary shares the ups and downs of watch-and-wait periods, switching medications, and navigating side effects. Along the way, she advocated for her own care and partnered closely with her doctor, making shared decisions that ultimately led her to a treatment that works best for her.

Mentioned on this episode: 

Additional LLS Support Resources: 

Supported by GSK plc.

The post Choosing the Path Forward: Shared Decisions in Myelofibrosis Care first appeared on The Bloodline with LLS.

“If you have a rare disease, it’s not rare to you.”

In this episode, Dr. Naveen Pemmaraju of MD Anderson Cancer Center in Houston, TX, sheds light on the latest treatment advancements for myelofibrosis. The pace of scientific discovery for rare diseases is moving at a fast rate, resulting in better outcomes for myelofibrosis patients.

*This episode was recorded on Rare Disease Day, February 29, 2024

Mentioned on this episode: 

Additional LLS Support Resources: 

Support for this episode provided by: GSK plc.

The post Hope for a Rare Disease: Myelofibrosis first appeared on The Bloodline with LLS.

In the episode, we explore the family of diseases called myeloproliferative neoplasms (MPNs). Dr. Anand Patel and Dr. Olatoyosi Odenike of The University of Chicago Medicine share the latest advances in treatments for MPNs, including myelofibrosis (MF), polycythemia vera (PV) and essential thrombocythemia (ET). We also highlight how treatment teams prioritize the improvement of patients’ quality of life as a key aspect of care.

Mentioned on this episode: 

Additional LLS Support Resources: 

Support for this episode is provided by University of Chicago Comprehensive Cancer Center.

The post Living with Myeloproliferative Neoplasms (MPNs) first appeared on The Bloodline with LLS.

Myeloproliferative Neoplasms (MPNS) is an umbrella term that includes myelofibrosis (MF), essential thrombocythemia (ET) and polycythemia vera (PV). In this episode, Dr. Angela Fleischman of the Chao Comprehensive Cancer Center in Orange, CA, delves into these disorders in more detail. She shares how a patient’s quality of life can be improved with the latest advancements in treatment.  

Mentioned on this episode: 

Additional LLS Support Resources: 

Support for this episode provided by: Bristol Myers Squibb.

The post Living A Full Life: Exploring Myeloproliferative Neoplasms (MPNs) first appeared on The Bloodline with LLS.

Join us as we speak to Dr. Brady Stein, a clinical hematologist and researcher at the Northwestern University Feinberg School of Medicine in Chicago, IL. In this episode, Dr. Stein discusses the rare blood cancer, myelofibrosis (MF), which is a type of myeloproliferative neoplasms (MPNs). Hear about the unique characteristics of MF, how it develops, and the current and emerging treatments that give MF patients hope.

Mentioned on this episode: 

• Myelofibrosis
• Myeloproliferative Neoplasms
• ASH (American Society of Hematology)
• Pushing for a Diagnosis: A Polycythemia Vera (PV) Story
• Clinical Trial Support Center

Additional LLS Support Resources: 

• Information Specialists 
• Free telephone/web patient programs 
• Free booklets 
• Financial support
• Online chats 
• Caregiver support 
• LLS Community 
• Support groups 
• Patti Robinson Kaufmann First Connection Program 
• Free Nutrition Consultations 
• LLS Advocacy
• LLS Myeloma Link

Support for this episode provided by AbbVie.

The post Under the MPN Umbrella: Exploring Myelofibrosis first appeared on The Bloodline with LLS.

Join us as we speak with David Wallace, a polycythemia vera (PV) patient and advocate.  In this episode, David shares how he struggled to get his diagnosis, advocated to get the treatment he needed, and finally how he found a specialist that was able to treat his PV. He used his struggles to create the website, PV Reporter and nonprofit, MPN Cancer Connection, to educate patients about their disease, help them find resources, and increase awareness of MPNs. David encourages all patients to become their own advocates and to actively participate in their cancer journey.

Mentioned on this episode:

• Polycythemia Vera (PV)
• Myeloproliferative Neoplasms (MPNs)
• PV Reporter
• MPN Cancer Connection

Additional LLS Support Resources:

• Information Specialists 
• Clinical Trial Support Center
• Free telephone/web patient programs 
• Free booklets 
• Financial support 
• Online chats 
• Caregiver support 
• LLS Community 
• Support groups 
• Patti Robinson Kaufmann First Connection Program 
• Free Nutrition Consultations 

Support for this episode provided by Incyte.

The post Pushing for a Diagnosis: A Polycythemia Vera (PV) Story first appeared on The Bloodline with LLS.