Thrilled for Polycythemia Vera (PV) Diagnosis! Publisher’s Note (David Wallace): It’s rare that I will accept an anonymous patient story, just one other in 7 years. Starting back in October 2019, a gentleman who found PV Reporter at the top of a google search, reached out offering to share a “summary” of his story. We […]
MPN Facebook Group Leader, Patient Advocate Spotlight
Tips on Living with MPN – Reflections on 2020 by Christine Kennedy As the New Year is under way, its a time of reflection. MPN are an evolving disease. The difference in the years of running MPN groups has shown in what were arguments into basic knowledge of diagnoses. The arguments of diagnoses have settled […]
What I Learned from going through Stem Cell Transplant for Myelofibrosis
No Time Like the Present – To Kick Cancer’s Butt by Heidi Cascarano It wasn’t in the plans. I had lived with the diagnosis of Polycythemia Vera, and then Myelofibrosis for 9 years. I was told I could live several years with them and that progression was the exception. My hope was amplified by my […]
Ten Year Anniversary Living with Polycythemia Vera Blood Cancer
Inspire by Living! by David Wallace Your numbers do NOT always reflect how you feel, so important to remember! I’ve felt like crap before and my numbers were good. How you feel is one of the most important measurement criteria, in my opinion. Counts were off on my last heme visit, about a month ago, […]
Repurposed Drug Interferon for the Treatment of Polycythemia Vera
Drug Gives Woman with Polycythemia Vera – Blood Cancer the Gift of Life This patient story was featured on ABC 7, Chicago News. It is encouraging to see MPN patients share their story on the local TV news media. The MPN Research Foundation also covered Karrie’s story in their latest newsletter. I wish more patients […]
