Simple Summary Myeloproliferative neoplasms (MPNs) represent a group of blood cancers characterized by the excessive production of blood cells in the bone marrow, including Polycythemia Vera (PV), Essential Thrombocythemia (ET), and Primary Myelofibrosis (PMF). Recent advancements in the field of molecular biology have significantly enhanced our understanding of the genetic underpinnings of these conditions. The […]
What Rare Disease Day Means to Me
by David Wallace Hi, my name is David, and I am a polycythemia vera (PV) warrior. PV is a rare blood cancer. To me, living with a rare disease is not just a medical journey; it’s a testament to resilience and the power of community. Rare Disease Day, for me, is more than just a […]
What is Blast Phase Myeloproliferative Neoplasm?
Abstract Leukemic transformation in myeloproliferative neoplasms (MPN), also referred to as “blast-phase MPN”, is the most feared disease complication, with incidence estimates of 1–4% for essential thrombocythemia, 3–7% for polycythemia vera, and 9–13% for primary myelofibrosis. Diagnosis of MPN-BP requires the presence of ≥20% circulating or bone marrow blasts; a lower level of excess blasts […]
MPN Patient Advocate: Strategies for Self-Advocacy and Better Health Outcomes
by David Wallace Living with myeloproliferative neoplasms (MPNs) can be challenging both physically and emotionally. MPNs are rare blood cancers that require continuous management and care. The three main types of MPNs are myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia (ET). As a patient, it is crucial to become your own advocate in order […]
Overcoming fear: How avid hiker and PV patient Gary put one foot in front of the other until he found a treatment that worked
Part of my inspiration for becoming an advocate and sharing information on PV Reporter is to encourage others living with PV to educate themselves and maintain a positive mindset, despite their diagnosis. I know how it feels to hear the words, “you have cancer,” and how that fear can impact one’s outlook on life. Throughout […]
Ojjaara, FDA Approved for Treatment of Myelofibrosis with Anemia
September 15, 2023 Ojjaara (momelotinib) approved in the US as the first and only treatment indicated for myelofibrosis patients with anemia Approval is for use in myelofibrosis patients with anemia regardless of prior myelofibrosis therapy Nearly all myelofibrosis patients are estimated to develop anemia over the course of the disease, and over 30% will discontinue […]
Polycythemia Vera Exercise Recommendations
Abstract Background Exercise therapy during cancer treatment reduces symptom burden and improves quality of life (QoL). Polycythemia vera (PV) is a myeloproliferative neoplasia associated with good overall survival (up to decades) but a significant symptom burden, including thromboembolic events and dysesthesias. There are no specific exercise recommendations for patients with PV. Thus, we aimed to […]
How should we define disease modification in MPN?
by David Wallace A disease modifying drug for MPN patients specifically targets disease-initiating stem cells that lead to MPN phenotypes, leading to regression of the disease while improving associated complications. Our guest MPN expert is Dr. Ghaith Abu-Zeinah from Weill Cornell Medicine in NYC. Listen in to learn more.
MPN Self Advocacy and Education: A Chat with David Wallace
PV Reporter and MPN Cancer Connection founder David Wallace is interviewed on “PV Pod: Stories from the Marrow.” In the newly released podcast, we shed light on MPN self-advocacy and education on myeloproliferative neoplasms. Helpful tips from the podcast: “It’s normal to be depressed and angry about the situation. I think seeking help is very […]
Observational Study Reveals Differences between Aquagenic and Non-aquagenic Itching in MPNs
Abstract Background Pruritus is a frequent symptom experienced by patients with myeloproliferative neoplasms (MPN). Aquagenic pruritus (AP) is the most common type. The Myeloproliferative Neoplasm-Symptom Assessment Form Total Symptom Score (MPN-SAF TSS) self-report questionnaires were distributed to MPN patients before consultations. Objectives The aim of this study was to assess clinical incidence (phenotypical evolution and […]
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