NC and SC MPN Patient Meeting June 7th, 2014 in Charlotte

Dr Brandi Reeves from UNC Chapel Hill will be the featured speaker We are excited to announce that Dr Brandi Reeves, a physician from University of North Carolina in Chapel Hill will be a speaker at the Carolina MPN Support group meeting on Saturday, June 7th (2014) at 2pm.  (This meeting was held in 2014) […]

Tour A MPN Research Lab – Irvine, CA

Leukemia & Lymphoma Society – Mary Sullivan’s MWOY Fundraising Page If you are in the Irvine CA area, please support a worthy cause: Dr Angela Fleischman says: “I’ve had the pleasure of getting to know a wonderful young woman named Mary Sullivan who has been living with CML since age 2. She was on IFNa for […]

Patient Access Network Foundation

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

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

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

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

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

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

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

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

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!

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

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

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

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

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

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

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

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

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

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

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

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 […]

23andMe Ordered by the FDA to Halt Sales of Genetic Test

Google backed Genetic Test Maker 23andMe told to Halt Sales by the Food and Drug Administration (FDA) As most readers know, 23andMe offered genetic testing for free to further research for MPN patients.  A noble gesture indeed.  I readily participated and found the highly detailed report very thought provoking, but perhaps “missing the mark” in […]

The American Society of Hematology (ASH) Annual Meeting and Exposition 2013

2013 ASH Annual Meeting and Exposition- KEY ABSTRACTS for Myeloproliferative Neoplasms December 7-10, 2013 – Ernest N. Morial Convention Center, New Orleans, LA   Myeloproliferative Neoplasms Absracts Frequent Mutations in the Calreticulin Gene CALR in Myeloproliferative Neoplasms The Genomic Landscape of Myeloproliferative Neoplasms: Somatic Calr Mutations in the Majority of JAK2-Wildtype Patients Increased Platelet Thrombus Formation Under Flow […]

Medical scientists in Melbourne invent novel approach worldwide to Cure Leukemia

Combo Blood Cancer Treatment Attacking JAK2 Protein – A Possible Approach to Curing Leukemia Australian medical scientists have discovered a new approach which is regarded as the landmark to kill blood cancer cells for treating a large number of aggressive adult and childhood leukemia, Melbourne’s Peter MacCallum Cancer Centre said via the Friday’s media release. The report […]

Living Well with Myeloproliferative Neoplasms

MPN town meeting Andrew Schorr from Patient Power -November, 23, 2013 – MD Anderson Cancer Center – Houston, TX Growing research is leading to a new understanding of Myeloproliferative Neoplasms (MPNs), including Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Primary Myelofibrosis (PMF).  Excitement is building among experts about new treatment options which are shaping up […]

Cancer Research & Treatment MPN Symposium 2013 Videos

7th International Patient Symposium on Myeloproliferative Neoplasms Click on the picture below for the VIDEOS from CR&T International Patient Symposium:             Index of Topics Covered and Presenters: New Concepts in Basic Biology of MPNs – John Crispino, PHD What is the Value of Epigenetic Therapy in MPN Treatment? – Ronald […]

The Landscape of Treatment Options for Myeloproliferative Neoplasms is Changing

MPN Research Moving Forward

Here is an Excellent Video by the MPN Research Foundation Pushing MPN Research Forward from MPNRF on Vimeo. Highlights Include: Bob Rosen founded in 1999 Energized research on MPNs Each day there is a chance for discovery MPN Research Foundation provides motivation to pursue MPN Research Essential for our progress Money well spent “We may […]

The World Leader in Medical Marijuana….Israel!

MPN Patients Report on Medical Marijuana by David Wallace There are nations across the world where the use of marijuana is legal, in Israel this is not the case.  All forms of drug use are generally considered to be illegal, except the use of medical marijuana, which is permitted in certain cases.  Israeli activists are […]

Emerging Drugs for Polycythemia Vera

Polycythem Vera – Expert Opinion on Emerging Drugs Raoul Tibes, Ruben A Mesa Mayo College of Medicine, Mayo Clinic, Mayo Clinic Cancer Center, Division of Hematology & Medical Oncology , 13400 E. Shea Boulevard, Scottsdale, AZ 85259 , USA +1 480 301 6740 ; +1 480 301 4675 ; . Expert Opinion on Emerging Drugs (Impact Factor: […]

Reversal Of Bone Marrow Fibrosis in Myelofibrosis

Imetelstat, a Telomerase Inhibitor, Induces Morphologic and Molecular Remissions In Myelofibrosis Geron is studying Imetelstat as a treatment for Myelofibrosis, a disease in which abnormal blood cells build up in the bone marrow, forming thick scar tissues that slows the production of healthy blood cells.  Other MF drugs treat the symptoms of the disease (Jakafi). […]

Myeloproliferative Neoplasm Webinar – November 13th at 3pm-4pm EST

Living with a MPN – Beyond the Medicine, Addressing Emotional & Financial Concerns I wanted to give a quick heads up to fellow MPN patients and caregivers.  The Cancer Support Community is hosting a free educational webinar.  The interactive webinar will highlight several issues that may be of interest. Click on the picture (link) below […]

The Marijuana Papers

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, […]

Well You Don’t Look Sick

A Phrase Commonly Heard by MPN Patients by David Wallace Isn’t it amazing how well we look?  In a group gathering of MPN patients you will see very few wheelchairs, walkers, canes, portable oxygen tanks or other medical devices required for daily living.  Behind the facade of  “well-appearing” individuals, we silently suffer from a long […]

 
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