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 […]
MPNs and Insomnia: Tips for Better Sleep
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65% of Myeloproliferative Neoplasm, Cancer Patients report Sleep Problems Part 5 in a New Series – “Addressing MPN Symptoms” (2019) by Heidi Cascarano Many people struggle with sleep disturbances, and we all know that lack of quality sleep can lead to daytime fatigue, diminished quality of life, and other health problems. What’s worse is that […]
Chronic Pain in Over 50 percent of MPN Cancer patients
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Prevalence of Chronic Pain and High-Impact Chronic Pain in Cancer Survivors in the United States Part 4 in a New Series – “Addressing MPN Symptoms” (2019) Jiang C, Wang H, Wang Q, Luo Y, Sidlow R, Han X. Prevalence of Chronic Pain and High-Impact Chronic Pain in Cancer Survivors in the United States. JAMA Oncol. Published […]
Targeted therapies for Myeloproliferative Neoplasms MPNs
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Abstract The discovery of JAK2V617F and the demonstration that BCR-ABL-negative myeloproliferative neoplasms (MPNs) are driven by abnormal JAK2 activation have led to advances in diagnostic algorithms, prognosis and ultimately also treatment strategies. The JAK 1/2 inhibitor ruxolitinib was a pivotal moment in the treatment of MPNs, representing the first targeted treatment in this field. Despite a […]
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 […]
Polycythemia Vera Brain Fog
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MPN Symptom Uncovered Part 2 in a New Series – “Addressing MPN Symptoms” (2019) by David Wallace This is no great “epiphany moment” article, just a quick report on a real myeloproliferative neoplasm (MPN) symptom I experience from time to time. Most mornings, I make a healthy smoothie to get me up and rolling. This […]
03: Learn Benefits of Becoming your own MPN Patient Advocate
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MPN Chronicles Podcast – 03, PV Reporter, Day 3, 2nd Trip to ER in 3 Days by David Wallace Chest pain continued to worsen after 1st trip to the ER, 2 days earlier. This was an immediate cause for immediate concern and a return trip to the ER on day 3 with Polycythemia Vera (PV). […]
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 […]
Autoimmune Disorders that May Coexist with Myeloproliferative Neoplasms (MPNs)
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by David Wallace As some MPN patients are aware of firsthand, there are a number of autoimmune diseases that may run concurrently with the condition – while these disorders are often exacerbated by the weakened immune system of MPN patients, inflammation also plays a key role. However, research has linked MPNs to a predisposition to autoimmune […]
Over the Counter Combo of Zyrtec and Zantac helping PV patients get relief from Itching!
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Part 1 in a Series – “Mast Cell Mania” at the Root of many MPN Symptoms Part 1 in a New Series (2019): “Addressing MPN Symptoms” by David Wallace Background A high percentage of polycythemia vera – MPN patients suffer from Aquagenic Pruritus, a fancy clinical term for itching. Few patients presenting with itching are […]
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 […]
September is Blood Cancer Awareness Month
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by David Wallace MPN Awareness for Blood Cancers in September Two quick items for news update: September is Blood Cancer Awareness Month, this is our time to promote MPN – Blood Cancer Awareness….be sure to post one of the many excellent images floating around on your Facebook profile (MPN Research Foundation and LLS have some […]
PV Reporter Newsletter Feb 2015 – Mega News Day!
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Well, what better way to kick off PV Reporter’s first newsletter of 2015! (yeah I know it is mid February:)….some big news on the MPN research front, new funding programs and a moving patient story. First up, let’s look at the new research – Mutation Order in Tumor Genes Affects Cancer Outcome. MPNs are particularly […]
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 […]
LLS Focuses on Molecular Drivers for Leukemia
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Leukemia & Lymphoma Society Initiatives to Halt Early Stage Myeloid Blood Cancers Fourth in ASH 2014 Series by David Wallace PV Reporter sits down with Dr Lee Greenberger, Chief Scientific Officer with LLS, to discuss initiatives to halt early stage myeloid blood cancers (MPNs & MDS). LLS has grants with Dana Farber to better understand […]
Tips on How to treat your Chronically Ill Friend
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Publisher’s Note I discovered the article “10 Tips of How to be a Friend to a Chronically Ill Sufferer” on Facebook and found it to be relevant for many MPN patients. I asked Mary McGregor, the author, if I could feature it on PV Reporter and she agreed. I like her self-described “rant” style, it […]
A key role for lymphoid cells in the pathology of myeloproliferative neoplasm
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Publisher’s Note In early July, we reported The MPN Research Foundation and LLS granted $1 million research funding for MPNs. Dr Angela Fleischman has been a key contributor to PV Reporter and was one of the MPN Challenge award winners. I asked her for a description of the research they will be working on and she […]
High levels of Inflammation disrupt normal blood formation potentially leading to leukemia
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Indiana University researchers identify events causing bone marrow inflammation leading to blood disorders Like a line of falling dominos, a cascade of molecular events in the bone marrow produces high levels of inflammation that disrupt normal blood formation and lead to potentially deadly disorders including leukemia. “It has been known for years that there are […]
Patient Access Network Foundation
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Financial Assistance for MPN Medications The PAN Foundation (PAN) offers assistance and hope to people with chronic or life-threatening illnesses for whom cost limits access to breakthrough medical treatments. Assistance from PAN allows patients to pay other bills, relieves stress and positively impacts overall health. I can personally attest this organization has been extremely helpful in […]
PV Reporter is proud to introduce Dr Angela Fleischman as consulting physician
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Dr. Angela Fleischman, Assistant Professor, Dept. of Medicine, Hematology/Oncology, UC Irvine Health Dr. Fleischman’s Bio: I am a physician-scientist dedicated to a life-long career investigating MPN, integrating my research with the clinical care of patients with this disease. My overarching goal is to identify what drives disease initiation in MPN and to ultimately translate my […]
The Marijuana Papers
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by David Wallace So I wrote this article originally as a contribution to the MPNforum in 2011 under a pen name and now feel it is time to come forward and stake claim, as this is still a very timely discussion. It was one of my favorite writing projects and my views remain the same, […]
Bone & Joint Pain in MPN Patients Explained
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From our www.mpdsupport.org archives from 1995, pearls of wisdom by the late Dr. Gilbert Dear Members: For your information re bone and joint pains in MPD. Several of you have mentioned that you suffer from bone and/or joint pains – sometimes attributed to arthritis. I have seen a number of patients who have this complaint […]
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