November is National Family Caregivers Month – What does it mean to be a caregiver? by Ina Gunson I am a 35 year old taking care of my 65 year old mother, Ruth who will be turning 66 next month. We have a very close bond, my Mom is my best friend. In 2017, she […]
What I Learned from going through Stem Cell Transplant for Myelofibrosis
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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
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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
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Drug Gives Woman with PV – 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 would […]
A Bad day Living with Polycythemia Vera
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Publishers Note: This note was sent to me on the comments/share a story part of this website and grabbed my attention. It was written by Mike Norris. After exchanging several emails, he said “I am not always Mr Gloom and Doom, I just waxed poetic one night and wrote out what was going on inside […]
Kickboxing my way to Sunshine!
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by Christine Kennedy Happy new year. I hope everyone will be in their best place this year. This disease has a depression end and numbers have a deep hold on us. Last year, physically and mentally, was my best year. Exercise Beats Exhaustion I started kickboxing. I think my body needed exercise. Giving in to […]
Heidi’s MPN Story – An Increasing Trend in Patient Advocacy
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by Heidi Cascarano “Watch and Wait…” What other cancer, in the 21st century, is so misunderstood that your local doctor will struggle to diagnose you, possibly tell you he has a few other patients with it, then advise you to do nothing but get a therapeutic phlebotomy and take a baby aspirin? You get online […]
Gary Vogt’s Rollercoaster Ride with Myelofibrosis
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Publisher’s Intro by David Wallace I met Gary and Kathy Vogt by sheer coincidence while taking the shuttle bus from the San Francisco airport to our downtown hotel, in early December 2014. We were there for the MPN Heroes Award Event, while I was also covering the ASH conference for PV Reporter. Numerous things struck […]
Polycythemia Vera Pre-diagnosis Patient Report
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Publisher’s Intro by David Wallace As a certified, red-blooded JAK2 positive Polycythemia Vera (PV) patient, I have always been fascinated by the events leading up to a PV diagnosis. By sharing our stories, perhaps we offer “a dose of comfort” to the new or recently diagnosed. When they read of struggles that other patient’s experience, […]
Riggins Black Polycythemia Vera Story
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Interferon use in PV – A Patient’s Perspective by Riggins Black Looking back at old CBCs, I found I “might” have had PV since 1971. By the way, this is a good reason for you all to become guardians of your medical records (no one will preserve them as well as you can). Although I’ve always […]
PV Warriors!
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by Gwen Lord For the last 20 years I have lived in a place named Colchester which is known as Britain’s oldest recorded town. Original roman walls still stand and mark the boundaries of a Roman Castle that is now used as a museum and contains many artefacts found in the Colchester area. Just a […]
Christmas Blessings
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Living and Laughing through a Blood Cancer by Marielle Lanoir It is hard to believe that Christmas is this week. Three years ago I would have provided Craig with a list of items I so “desperately” needed. Probably another purse, perfume or some other vital item I had to have to get through the following […]
Jason Rappaport’s Polycythemia Vera Story
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Publisher’s Introduction by David Wallace After experiencing my own “unpleasant….putting it kindly” tango with Poly, I transitioned through various stages of grief and have seen other patients travel a similar path over the last few years. Rarely have I seen a newly diagnosed patient jump in full bore with both feet, wet behind the ears […]
Jane Murray’s MPN Story
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A Moving Video Account of Jane’s Pre-diagnosis MPN Medical Mishaps After listening to Jane’s video presentation, I was deeply moved by her story and asked if I could post it, along with her comments from an online forum. Thankfully, she accepted the post invite graciously and without hesitation. She presented at the MPN Awareness day on […]
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