by Stine Ulrik Mikkelsen, Lasse Kjær, Mads Emil Bjørn, Trine Alma Knudsen, Anders Lindholm Sørensen, Christen Bertel Lykkegaard Andersen, Ole Weis Bjerrum, Nana Brochmann, Daniel El Fassi, Torben A. Kruse, Thomas Stauffer Larsen, Hans Torben Mourits‐Andersen, Claus Henrik Nielsen, Niels Pallisgaard, Mads Thomassen, Vibe Skov, Hans Carl Hasselbalch Abstract Interferon‐α2 reduces elevated blood cell counts […]
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). […]
Publisher’s Note: PV Reporter will spotlight organizations and groups from time to time that have a unique message to share and help MPN patients as well. I have known Jeremy since I first got involved in the Facebook Support Groups 9 years ago. He had a positive influence on me personally and I have seen […]
PV Reporter gets Local News Coverage for his work on Patient Advocacy and MPN Awareness by Lacey Hampton David Wallace’s experience after being diagnosed with a type of blood cancer led him to want to raise awareness and help others. He created PV Reporter, a website that provides easy access to information on Myeloproliferative Neoplasms […]
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 […]
Publishers Note: Researcher Associate Professor Jeff Babon advises: This is very early stage research. It gives us the blueprint to begin to develop a medicine that targets the molecule, JAK2, that is responsible for PV and other MPNs in a novel way, the same way that is used by own our natural JAK2-inhibitory protein (called SOCS1). […]
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 […]
MPN Chronicles Podcast – Interview with Dr. Naveen Pemmaraju In today’s podcast, Episode 02, I am very pleased to interview Dr. Naveen Pemmaraju, MPN Specialist from MD Anderson Cancer Center in Houston, TX. Highlights of this Episode: Insomnia in MPNs – one of the most detailed explanations on our sleep problems revealed! MDS / MPN […]
MPN Chronicles Podcast This podcast will cover the PV journey I endured since day 1 of diagnosis at the Mint Hill Urgent Care, the days spent with chest pain that felt like a heart attack was “coming soon.” I will discuss my trip to the Emergency Room and the frustration that followed in trying to […]
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 […]
by David Wallace Let’s Define the term “Rare Disease” Now that all of the hoopla of “Rare Disease Day” has passed, it is time to peel away the layers of misconception, myths and false belief to uncover the truth. First of all, let’s define the term “rare disease.” In the United States, a rare disease […]
Bob Rosen was the first MPN patient I ever met, but that was not what he wanted you to take away from meeting him. He was first and foremost a man of action and purpose. It is those qualities that made it possible for him to undertake what became his legacy to the world, after […]
Some Jobs and Familial Clustering are Likely Suspects in Possibly developing an MPN by David Wallace The daily exposure to toxic chemicals over the span of a career may be a strong factor in leading numerous workers to develop an MPN. Certain chemicals we know are problematic, include Benzene and Toluene, as well as radiation. […]
A Pet is like Medication Minus the Side Effects Second in a Series – “Natural Healing Ideas for MPN patients” by David Wallace There have been many studies weighing the emotional and physical benefits of owning a pet. One study found that people with pets had significantly lower heart rates and blood pressure than non […]
European Hematology Association publishes new journal with Wolters Kluwer June 22, 2017, Madrid – The European Hematology Association, the largest Europe-based association of hematologists, launched its new journal HemaSphere with publisher Wolters Kluwer at the 22nd Annual Congress of EHA in Madrid. HemaSphere is an open access journal dedicated to support hematology patient care, research […]
Myelofibrosis A Phase 2 Study of the Safety, Tolerability, and Efficacy of INCB050465 in Combination With Ruxolitinib in Subjects With Myelofibrosis The purpose of this study is to evaluate the safety, tolerability, and efficacy of the combination of INCB050465 and ruxolitinib in subjects with myelofibrosis Talk to your doctor if you are interested in participating […]
First in a Series – “Natural Healing Ideas for MPN patients” by David Wallace A Personal Perspective Over the years, I have enjoyed a good massage on rare occasion. An intense week of maneuvering the challenging slopes in Alta, Deer Valley and Snowbird, Utah comes to mind, about 15 years ago (pre-PV). After 3 or […]
Our Third Year attending the MPN Heroes Program by David Wallace For the past 4 years, Cure Magazine and Incyte Corporation have recognized leaders within the MPN community with the MPN Hero award. The two categories include commitment to the individual or community. I am honored to receive this award for “commitment to the broader […]
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 […]
The Zyrtec and Zantac combo is helping MPN patients get relief from Itching! Note: At the bottom of the newsletter, in the left hand corner is a “next page” turner arrow. You need to hover in this area to get the arrows to appear, as well as the zoom buttons.
Click here for link to original publication. Note: At the bottom of each PDF page, be sure to click on the arrow (bottom left corner) to proceed to the next page. Copyright: c2016 Skov et al. This is an open source article distributed under the terms of the creative commons attribution license, which permits unrestricted […]
Publisher’s Note: PV Reporter is very pleased to welcome Kate Newberry as contributing writer. She is collaborating with me on the Mast Cell Mania series providing the “medical commentary.” Kate Newberry is a Senior Research Scientist in the Department of Leukemia at The University of Texas MD Anderson Cancer Center collaborating with Dr. Srdan Verstovsek, […]
Part 1 in a Series – “Mast Cell Mania” at the Root of many 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 tested for PV, but it is a classic symptom that […]
The following abstract involved the work of Dr Ron Hoffman, the principle investigator (PI), senior member of the MPN group at Mt Sinai Hospital in New York City as well as the PI of the MPN-RC. Xiaoli Wang, Phd, performed all of the lab work. Dr John Mascarenhas was my point of contact for this […]
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 […]
A Patient’s Perspective – Methods to Improve MPN Research by Collecting data and Blood test results from Patients by David Wallace As a PV patient, my treatment has run a wide spectrum during the last 6 years. Starting with phlebotomy only, Hydroxyurea (short time frame), Pegasys (nearing 2 years) and now the “cutting edge combo” […]
Citation: Blood Cancer Journal (2015) 5, e351; doi:10.1038/bcj.2015.77 Published online 2 October 2015 The combination of ruxolitinib and dasatinib was safe and effective in the treatment of concomitant PV and CML in this patient A Zhou1, E M Knoche1, E K Engle1, D A C Fisher1 and S T Oh1 1Division of Hematology, Washington University School of Medicine, St Louis, MO, USA […]
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 […]
by mpdsupport.org Clinical Trials for MPNs are on the Rise! If you have MF, PV or ET but don’t need medication now, you may think that clinical trials don’t matter to you. But that could change, at which point you may want to review your options. Thankfully, over the past years the interest in developing […]
by David Wallace Be sure to watch the video of Dr Ayalew Tefferi, from Mayo Clinic, as he explains the initiative. Click below for the article. Source: In Support of a Patient-Driven Initiative and Petition to Lower the High Price of Cancer Drugs – Mayo Clinic Proceedings As a cancer patient who takes a cocktail […]
Researchers have discovered a way to potentially make drugs more effective at treating certain blood cancers. Source: Discovery Could Boost New Therapies for Myeloproliferative Neoplasms | Memorial Sloan Kettering Cancer Center
A new drug aimed at dormant cancer stem cells that hide in the hypoxic zones of bone marrow that most other drugs can’t reach is currently in 5 clinical trials. Source: New blood cancer drug reaches cells hiding in bone marrow – UPI.com
Pain in Your Big Toe?… Uric Acid might be the Culprit “pearls of wisdom” by the late Dr. Gilbert, courtesy of mpdsupport.org For your information re Uric Acid in MPN: Uric acid is a by-product of the metabolism of nucleoproteins. These are molecules that arise from DNA and RNA released by cells when they die. Patients with […]
by Marcy Worthington, Charla Billick, Christine Kelly Kennedy and multiple contributions from members of the Polycythemia Vera Supportive Friends Support Group When we have an appointment scheduled with our doctor (hopefully an MPN Specialist at some point) it is helpful to have a list of questions to be properly prepared. It also helps to know […]
by Dave Stewart YOU’VE JUST BEEN DIAGNOSED WITH PV… …and now, most likely, you’re looking online for info…anything…to tell you what to expect, what’s next, how long you’re going to live… First things first – Don’t panic. Easier said than done, but learning how to control your stress and keep it at a healthy level […]
2015 MPN Research Update by Dr. Angela Fleischman We are continuing to work on the role of inflammation in MPN. The human immune system turns on the immune response when it recognizes invaders such as bacteria or viruses by producing inflammatory proteins, also called cytokines. Cytokines are helpful to fight infection but if the immune […]
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 […]
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 […]
by David Wallace PV Reporter covering the American Society of Hematology (ASH) 2014 conference in a series format For me personally, highlights go beyond the research that was presented (ASH 2014 Outside the Box, addresses that in detail). It was about meeting friends…old and new (in person), attending the MPN Heroes Awards Presentation, the excitement […]
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, […]
The LLS and Janssen Research & Development, LLC have committed $1.7 million for the initiative White Plains, NY (October 28, 2014) – The Leukemia & Lymphoma Society has initiated a program to fund research projects seeking to better understand and, ultimately, stop progression of certain types of blood cancers from early-stage malignancies to much more […]
Geron announces removal of Full Clinical Hold on Imetelstat The full clinical hold on Geron’s sole pipeline candidate, investigation new drug (IND), Imetelstat, has been lifted by the FDA. The company does not intend to conduct further studies or develop imetelstat for the treatment of essential thrombocythemia (ET) or polycythemia vera (PV). The development plan […]
MPN Information on Your Phone PV Reporter has introduced a new mobile app that you can download to your phone (iOS or Android). The app provides instant access to multiple pages on our website (MPN Search, Videos, News Feed, Resources), Facebook page, Twitter page, email contact information and the ability to share the app via social […]
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 […]
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 […]
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 […]
MPN Research gains momentum with Increased Funding The MPN Research Foundation and The Leukemia & Lymphoma Society (LLS) are proud to announce that ten new research projects will receive funding through their collaboration, renamed MPN Challenge in 2014. The focus areas for this project were conceived at a meeting of academia and industry convened by […]
Jakafi Improves Symptoms in PV In phase 3 randomized controlled trial, Jakafi (ruxolitinib) improved several key symptoms in polycythemia vera, according to Dr Srdan Verstovsek of MD Anderson Cancer Center in Houston. Results from the RESPONSE trial were presented at the 2014 ASCO (American Society of Clinical Oncology) annual meeting in Chicago. PV is a […]
Update on Upcoming MPN surveys Dear MPN Community, We are currently in an unprecedented time regarding greater understanding of myeloproliferative neoplasms (MPNs). The testing of new therapeutic agents and a genuine effort to improve the education of providers and patients will help increase options and achieve better patient outcomes. This spring of 2014, three different […]
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 […]
by Dr. Hans C Hasselbalch Chronic inflammation is suggested to contribute to the Philadelphia-chromosome-negative myeloproliferative neoplasm (MPN) disease initiation and progression, as well as the development of premature atherosclerosis and may drive the development of other cancers in MPNs, both nonhematologic and hematologic. The MPN population has a substantial comorbidity burden, including cerebral, cardiovascular, pulmonary, abdominal, […]
FDA asks Geron to Halt Development of Imetelstat The FDA has placed it’s only pipeline candidate, imetelstat, on full clinical hold. The news sent shares of GERN plunging 61% on March 12, 2014. Geron had submitted an Investigation New Drug (IND) application for imetelstat, but the FDA issued a verbal notice halting the trials. This […]
by Dr. Angela Fleischman Synopsis of ASH 2013 Abstract: “Analysis of Molecular Responses and Chromosomal Aberrations in patients with PV treated with Peg-Proline-Interferon Alpha-2b (AOP2014/P1101) in the Peginvera study” by Them et al This abstract describes the chromosomal analysis of PV patients on the Peginvera study (a study investigating a long-acting IFNa which can be […]
MPN Updates – New Resource for Physicians by David Wallace As the number of MPN patients continues to grow, the need for innovative, physician-based resources has started to develop. While patient based (and Foundation/non-profit) websites focused on MPNs have flourished during the last few years, our disease tends to get tossed into the general “blood cancer” coverage, […]
Synopsis of: An overview on CALR and CSF3R mutations and a proposal for revision of WHO diagnostic criteria for Myeloproliferative Neoplasms by Dr. Angela Fleischman We are rapidly learning more about the mutations acquired by cancer cells, this is particularly evident in blood malignancies. Most recently, calreticulin mutations have been identified in the majority of […]
PV Reporter Update Greetings PV Reporter readers – I want to give you an update on some recent activity as we weather the winter chill. This is an exciting time, as there are many discoveries being made in the MPN world. As you may have guessed by now, I don’t send out too many newsletters […]
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 […]
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 […]
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 […]
Nordic guidelines on the diagnosis and treatment of patients with Myeloproliferative Neoplasms The Nordic study group on myeloproliferative neoplasms (NMPN) is a pan-Nordic organization that has conducted Nordic clinical trials since 2001. NMPN decided in 2006 to write new guidelines, based on already existing national guidelines from the Nordic countries, Italy1 and Great Britain.2 The first […]
This update is provided by the MPN Research Foundation This year’s American Society of Hematology (ASH) meeting provided a bittersweet update on the progress of JAK inhibition therapy in the MPNs. As many readers already know, the Sanofi JAK inhibitor, which had completed Phase 3 trials and was well on its way to the FDA […]
JAK2 or CALR mutation status defines subtypes of ET with substantially different clinical course and outcomes Key Points JAK2 (V617F) mutated essential thrombocythemia and polycythemia vera are different phenotypes in the evolution of a single neoplasm CALR mutated essential thrombocythemia is a distinct disease entity not only at molecular level but also with respect to clinical outcomes Abstract Patients with […]
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 […]
Dear MPN Patient, Hello! Allow me to introduce myself – my name is Molly Guy, my dad Robert Rosen is the founder of the MPN Foundation, and I’ve been a board member for over two years. In 1998, after experiencing numbness in his fingers and toes, and endless disorienting doctor’s visits, my Dad found himself […]
Pegylated Interferon Alfa-2a Salvage Therapy in High Risk Polycythemia Vera (PV) or Essential Thrombocythemia (ET) Ruben Mesa, M.D., hematologist at Mayo Clinic in Arizona, discusses the Myeloproliferative Disorders Research Consortium (MPD-RC 111), a clinical trial investigating single arm salvage therapy with pegylated interferon alfa-2a for patients with high risk polycythemia vera or high risk essential […]
Randomized Clinical Trial of Pegylated Interferon alfa-2a versus Hydroxyurea Ruben Mesa, M.D., hematologist at Mayo Clinic in Arizona, discusses MPD-RC 112, a randomized trial of pegylated interferon alfa-2a versus hydroxyurea therapy in the treatment of high risk polycythemia vera (PV) and high risk essential thrombocythemia (ET). Key Points: Why are we doing the Study? Top […]
Myeloproliferative Neoplasms are Chronic Illnesses Though rarely discussed in terms of Chronic Illness, MPNs most definitely fit the bill. Having a chronic illness, especially one that involves pain, fear and many unknowns, is concerning not only for patients but also the doctors who care for us. One doctor offers his perspective on what it is […]
PV Reporter Gaining Recognition in the MPN World by David Wallace As you peruse this article, please keep in mind the publisher is not a “publicity-hound”, but getting recognized by the leading MPN publication is an occasion to celebrate! Three months running and PV Reporter has drawn several thousand readers with many new visitors flocking in […]
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 […]
JAK2V617F allele burden is associated with thrombotic mechanisms activation in patients with Polycythemia Vera and Essential Thrombocythemia Abstract The clinical courses of polycythemia vera (PV) and essential thrombocythemia (ET) are characterized by thrombohemorrhagic diathesis. Several groups have suggested an association between JAK2V617F mutation and thrombosis. We hypothesized a relationship between JAK2V617F allele burden, cellular activation […]
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