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 as I want to highlight important events taking place with PV Reporter and hope you come back frequently to check for new content.  I would also like to extend a warm welcome to our new subscribers.  If you are not already a subscriber, please join us by clicking in the top right hand corner “Subscribe to Newsletter” or on the contact page.

Constantly Researching

research MPNsWhile I received an A- (always room for improvement) in computer classes, I struggle a bit in “pre-med” school.  By that, I mean all MPN patients who want to become “empowered patients” striving to obtain the best medical care from their physicians need to stay abreast of the latest research and MPN treatments from around the world.  So as I see it, we are all in MPN-101, 201, 301…..well you get the idea.  In doing so, we have the tools to work as a team with our doctors, while insuring we receive the best treatment possible for our own flavor of MPN (PV, ET, MF).

A New Breed of Patients

It was a 1 year battle for me personally to find a “local heme” who was willing to treat PV with Interferon (Pegasys), after consulting with an MPN specialist.  The very mention of Interferon to a couple of doctors was met with a frightening look of bewilderment and a statement of sorts “uh, we don’t use Interferon for PV, there are terrible side effects…..perhaps you should consider Hydroxyurea (HU) or stay the course with phlebs and aspirin.”

While I am not promoting the use of Pegasys, that is a medical decision best left up to you and your doctor.  I can report an increase in the number of patients who are diligently learning the “pros and cons” of emerging treatments for MPNs. Patients are marching into doctor’s offices armed with research reports, collective knowledge from MPN related Facebook groups & websites and guiding their physician towards their preferred treatment.

So where is all of this “cold medicine induced rambling” leading to?  Well, in order to provide easy to digest medical interpretation of some Phd level research studies –

PV Reporter is proud to introduce Dr. Angela Fleischman, Assistant Professor, Department of Medicine, Division of Hematology/Oncology, UC Irvine Health as our first consulting physician.  She will provide summaries on some of the research abstracts, as well as research updates.  The first one can be found here – Synopsis of: An overview of CALR and CSF3R mutations and a proposal for revision of WHO diagnostic criteria for Myeloproliferative Neoplasms.

Here is Dr. Fleischman’s biography:

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 scientific discoveries into a benefit for patients.

I have had a long-standing interest in blood cell development, beginning during my PhD graduate studies.  After completing my MD and PhD at Stanford in 2005, I came to Oregon Health & Science University (OHSU) for my internal medicine residency and medical oncology fellowship. My interest in MPN began during early residency, where I cared for MPN patients in the Hematologic Malignancies clinic at OHSU. I immediately identified MPN as my disease of interest and have been passionate about becoming an expert in its pathogenesis and treatment ever since.

After completing my medical oncology fellowship in July 2011 I transitioned to Instructor at OHSU. This has allowed me protected time to build upon my research. In July 2013 I began my career as an Assistant Professor at University of California Irvine. My research laboratory at UC Irvine is a direct extension of my MPN work at OHSU.

My research interest in MPN is inspired by my care of patients with this disease. The ability to follow patients over many years has also allowed me to develop many valued relationships with patients, and this is an important part of why I became a physician. I plan to maintain this integration between my clinic and research efforts throughout my career.

As PV Reporter expands capabilities on the medical side of the house, keep in mind the site offers easy point and click navigation, as well as:

If you are interested in contributing your time and efforts to help PV Reporter grow, and continue to serve the needs of the MPN community or sharing your personal story, please send me an email – david@pvreporter.com  or use the contact form. Your efforts would be greatly appreciated. Comments and suggestions are encouraged.

I appreciate your continued support.

Best regards,

David Wallace – PV Reporter




About David Wallace

Founder of PV Reporter, a resource for Myeloproliferative Neoplasm (MPN) patients and caregivers. After being diagnosed with Polycythemia Vera (PV) in 2009, I utilized social media to connect with "informed patients" and develop a better understanding of emerging treatment options. My philosophy on patient care is straight forward - "educating the patient is essential, so the patient can guide their physician to meet his or her needs." PV Reporter is a comprehensive resource hub giving visitors vital tools to become "empowered patients."

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