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 […]
The AACR-MPM Oncology Charitable Foundation Announces First Grants to Support Transformative Cancer Research
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PHILADELPHIA, PA and CAMBRIDGE, MA – Two grants for research that could transform cancer therapies have been funded through an innovative partnership between the American Association for Cancer Research (AACR) and MPM Capital through its management of the UBS Oncology Impact Fund (OIF). This unique grant program allows investigators who can make a significant impact […]
Ropeginterferon Effective Treatment for Polycythemia Vera
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Thrombotic Risk Reduction and High Rate of Complete Molecular Response with the Long Term Use of Ropeginterferon Alpha-2b in Polycythemia Vera: Results from a Randomized Controlled Study, ASH 2019 interview with Dr. Kiladjian by David Wallace Dr. Jean Jacques Kiladjian, Professor of Clinical Hematology, Hopital Saint-Louis, Paris, France interviews with David Wallace, PV Reporter at […]
PV Reporter Attends MPN Horizons 2019, 4th Annual Global Conference
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4th year in Attendance by David Wallace On October 25th, 2019 approximately 50 MPN advocates representing over 25 advocacy groups from around the world met in Lisbon, Portugal for 3 days. The objective was to share best practices of support and advocacy activities, learn about new MPN research and discuss issues that patients in each […]
MPN Caregiver Spotlight
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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 […]
Zantac Recall Expands, New Options help PV patients calm Itching
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MPN Patients have multiple Over The Counter options to relieve Itching! by Jennifer Acker For many PV patients the combination of Zantac (an H2 blocker) and Zyrtec (an H1 blocker) have been effective in providing relief from pruritus, a severe itching condition that is a common MPN symptom. PV Reporter first uncovered this impressive treatment […]
Podcast
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MPN Chronicles Podcasts This Podcast will cover many elements of my Polycythemia Vera (PV) journey, from the day of diagnosis til present. Hopefully you will find tips in living with an MPN that you can relate to, while understanding the need to become your own advocate. The Podcast is not to be construed as medical […]
Geron Granted Fast Track Designation on Imetelstat for MF
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Geron Announces Fast Track Designation Granted to Imetelstat for Relapsed/Refractory Myelofibrosis MENLO PARK, Calif., Sept. 30, 2019 (GLOBE NEWSWIRE) — Geron Corporation (Nasdaq: GERN) today announced that the United States Food and Drug Administration (FDA) has granted Fast Track designation to imetelstat for the treatment of adult patients with Intermediate-2 or High-risk myelofibrosis (MF) whose […]
05: Tips to Living Well with an MPN
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MPN Chronicles Podcast – 05, Tips to healthy living with a Myeloproliferative Neoplasm by David Wallace It’s important for us, as patients to do everything we can naturally to help our body fight MPNs. Here are a few tips: • Eating right, a balanced diet is especially important if you have an MPN as eating […]
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 […]
Inrebic (Fedratinib) receives FDA Approval for Myelofibrosis
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The First New Treatment in Nearly a Decade for MF Patients INREBIC provides new, once-daily oral option for patients affected by rare bone marrow cancer SUMMIT, N.J.–(BUSINESS WIRE)–Celgene Corporation (NASDAQ: CELG) today announced the U.S. Food and Drug Administration (FDA) has approved INREBIC® (fedratinib) for the treatment of adult patients with intermediate-2 or high-risk primary or […]
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 […]
Nutrition and Diet May Reduce Chronic Inflammation while Improving Symptom Burden in MPN Patients
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Nutrition for MPN Patients Part 3 in a New Series – “Addressing MPN Symptoms” (2019) We know diet plays a role in inflamation. Chronic inflammation may be an important driving force for clonal evolution and disease progression in myeloproliferative neoplasms (MPNs), essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF). So with that in mind, eating 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 […]
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, […]
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 […]
Celgene’s Fedratinib Given FDA Priority Review for New Drug Application in Myelofibrosis
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PV Reporter was first to break the news on the Expanded Access Program for Fedratinib for Myelofibrosis Patients on November 16th, 2018. The next logical step for Celgene was filing for New Drug Application – Granted by the FDA on March 5th, 2019 Celgene Corporation announced today the U.S. Food and Drug Administration has accepted […]
Constellation Pharmaceuticals Update on MANIFEST Clinical Trial of CPI-0610 in Myelofibrosis
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CAMBRIDGE, Mass., Jan. 03, 2019 (GLOBE NEWSWIRE) – Constellation Pharmaceuticals, Inc. (Nasdaq: CNST), a clinical-stage biopharmaceutical company using its expertise in epigenetics to discover and develop novel therapeutics, today provided an update on progress in the MANIFEST Phase 2 clinical trial of CPI-0610 in myelofibrosis (MF). The Company also reviewed its 2018 accomplishments and announced its data […]
04: First Hematologist Appointment for Polycythemia Vera Patient
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MPN Chronicles Podcast – 04, PV Reporter, Always Ask Your Doctor for your CBC or your test results and keep a binder to Monitor your Progress by David Wallace After 2 visits to the ER, I finally had my first hematologist meeting. She reviewed the tests that were done in the ER and ran a […]
PV Reporter partners with PAN Foundation on MPN Patient Assistance Programs
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Patient Assistance Programs, Medications for MPN Patients by David Wallace PV Reporter is very proud to announce a new partnership with the PAN Foundation. Myeloproliferative Neoplasm (MPN) patients may be eligible for $8,500 per year (or more if a 2nd grant is needed/approved) in assistance assuming you meet the eligibility criteria which are very reasonable. […]
Dr. Jean Jacques Kiladjian ASH 2018 RuxoPeg Phase 1/2 Trial of the Combo of Ruxolitinib and Pegasys in Myelofibrosis Patients
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RUXOPEG is the first study to formally assess the safety and efficacy of Rux + IFNa combination in MF patients never exposed to either drugs before First in ASH 2018 Series by David Wallace Dr Jean Jacques Kiladjian, Professor of Clinical Hematology, Hopital Saint-Louis, Paris, France interviews with David Wallace, PV Reporter at ASH 2018. […]
Breaking news on Celgene’s Fedratinib for Myelofibrosis patients!
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by David Wallace Fedratinib by Celgene, offered on Expanded Access Program (EAP) for Myelofibrosis Patients This is hot off the press! So hot, that no one has covered it until now – brought to you by PV Reporter. I knew after combing through the ASH (American Society of Hematology) abstracts that something was missing. That […]
Safety and efficacy of combo therapy of interferon-a2 and ruxolitinib in polycythemia vera and myelofibrosis
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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 […]
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). […]
Spotlight on MPN Life
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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 […]
Cancer Survivor helping others – Newspaper article on David Wallace
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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 […]
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 […]
Structure of Protein Pair Provides Blueprint for Future Drugs
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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). […]
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 […]
02-Interview with Dr. Naveen Pemmaraju, MPN Specialist, MD Anderson Cancer Center
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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 […]
01: Polycythemia Vera Diagnosis, PV Reporter, Day 1, Doomsday or Living with a plan?
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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 […]
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 […]
Are Myeloproliferative Neoplasms a Rare Disease?
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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 […]
In Memory of Robert Rosen, Founder of the MPN Research Foundation
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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 […]
Ropeginterferon Induces High Rates of Response in Polycythemia Vera
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Two Year Results from the First Prospective Randomized Controlled Trial Third in ASH 2017 Series by David Wallace Dr Jean Jacques Kiladjian, Professor of Clinical Hematology, Hopital Saint-Louis, Paris, France interviews with David Wallace, PV Reporter at ASH 2017. Discussing Ropeginterferon Alfa-2b Induces High Rates of Clinical, Hematological and Molecular Responses in Polycythemia Vera – […]
Occupational and Chemical Exposure that may cause MPNs, Along with Familial Clustering
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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. […]
The Health Benefits of Dog Ownership for MPN Cancer Patients
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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 […]
HemaSphere is an OPEN ACCESS Journal dedicated to support hematology patient care research and education worldwide
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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 […]
Incyte conducts Phase 2 Clinical Trials for Myelofibrosis and Essential Thrombocythemia
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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 […]
Health Benefits of Therapeutic Oncology Massage for MPN Cancer patients
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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 […]
David Wallace, PV Reporter honored with 2016 Cure Magazine MPN Hero Award
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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 […]
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 […]
MPN Focus Fall2016 – MD Anderson Newsletter – Itching Tips, PV Reporter
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The Zyrtec and Zantac combo is helping MPN patients get relief from Itching! Note: Download PDF is a small icon on the top of the gray title bar, just below.
Seven Gene Signature Depicts the Biochemical Profile of Early Prefibrotic Myelofibrosis
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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 […]
Mast Cells and Histamine in MPN Related Itching Explained
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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, […]
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 […]
A thrombopoietin receptor antagonist is capable of depleting MF hematopoietic stem and progenitor cells
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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 […]
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 […]
An Opportunity to improve measurement of health related quality of life symptoms using MPN Patient reported outcomes
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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” […]
Concomitant JAK2 V617F-positive PV and BCR-ABL-positive CML with ruxolitinib and dasatinib
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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 […]
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 […]
MPN Clinical Trial Highlights for Summer 2015
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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 […]
In Support of a Patient-Driven Initiative and Petition to Lower the High Price of Cancer Drugs
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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 […]
Discovery Could Boost New Therapies for Myeloproliferative Neoplasms
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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
New blood cancer drug reaches cells hiding in bone marrow
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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
Gout in MPN Patients Explained
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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 […]
Questions to Ask your Doctor for a PV Appointment
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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 […]
PV For Newbies – A Patient’s Perspective
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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 […]
The Fleischman Lab Continues Investigating the Role of Inflammation in MPN
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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 […]
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 […]
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 […]
Dr Heinz Gisslinger Enlightens us – Treating MPNs with Interferon for 30 Years
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AOP 2014 – The Next Generation Interferon Second in ASH 2014 Series by David Wallace Dr Heinz Gisslinger from Vienna, Austria is a pioneer in treating MPN patients with Interferon (IFN). PV Reporter sits down with Dr Gisslinger at ASH 2014 to discuss the history of Interferon treatment in MPNs, as well as AOP 2014. […]
ASH 2014 Series Coverage
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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 […]
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, […]
Leukemia & Lymphoma Society Launches New Program to Halt Progression of Myeloid Blood Cancers
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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 […]
MPN Clinical Trial updates from Geron and Promedior
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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 […]
PV Reporter introduces new Mobile App
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MPN Information on Your Phone PV Reporter has introduced a new mobile app that you can download to your phone (iOS). The app provides instant access to multiple pages on our website (MPN Search, News Feed, Resources), Facebook page, Twitter page, PV Tracker Tool, email contact information and the ability to share the app via […]
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 […]
New $1 Million research funding announced for PV, ET and MF
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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 One Step Closer to Approval for Polycythemia Vera
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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 […]
Final of 3 MPN Patient Surveys
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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 […]
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 […]
Impact of JAK-inhibitor therapy on inflammation-mediated comorbidities in MPNs
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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, […]
Geron’s Clinical Trials of Imetelstat put on Hold
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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 […]
Synopsis of ASH 2013 Abstract – Peginvera study
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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 […]
New Physician Based MPN Newsletter Emerges
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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, […]
Proposed Revision of WHO Diagnostic Criteria for MPNs
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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 Newsletter #5, Feb. 8, 2014
12:24 pm By
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 […]
PV Reporter is proud to introduce Dr Angela Fleischman as consulting physician
12:19 pm By
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 […]
Riggins Black Polycythemia Vera Story
3:13 pm By
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!
6:18 pm By
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 MPN Study Group 2013
4:24 am By
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 […]
ASH 2013 News on MPNs
12:24 am By
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 […]
CALR Mutated Essential Thrombocythemia is a distinct disease
9:55 pm By
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 […]
Christmas Blessings
2:34 pm By
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 […]
Support the MPN Research Foundation
2:55 pm By
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 […]
MPD-RC 111 Clinical Trial for High Risk Polycythemia Vera or Essential Thrombocythemia
5:12 am By
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 […]
MPD-RC 112 Clinical Trial for High Risk PV and ET Patients
3:36 pm By
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 […]
Chronic Illness – A Physician’s View of Patients
3:30 am By
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 featured on MPNforum
5:33 am By
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 […]
Jason Rappaport’s Polycythemia Vera Story
11:13 pm By
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 […]
Positive Correlation seen between JAK2V617F allele burden and thrombotic mechanisms activation in Polycythemia Vera and Essential Thrombocythemia patients
6:55 pm By
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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