PV Reporter

Introduction

PV Reporter was created to provide “easy access” to pertinent information on Polycythemia Vera (PV),  Essential Thrombocythemia (ET) and Myelofibrosis (MF).  These disorders are Myeloproliferative Neoplasms (MPNs), a closely related group of blood cancers where the bone marrow cells that produce the body’s blood cells function and develop abnormally.  If you are a newly diagnosed patient or researching MPNs, make PV Reporter your starting point.  While many existing MPN websites provide excellent content, they tend to be internally focused or lack external search capabilities.  PV Reporter solves that problem with MPN Search, a “custom search engine” retrieving exactly the information you are looking for!

In the Spotlight – Top Articles and Pages

MPN Specialists

One of the most important things a patient can do is see a true MPN Specialist, the earlier on in the course of your disease, the better.  Here are some important criteria to consider.

This list has been reviewed by a MPN expert and each additional specialist added has been carefully vetted.  A patient recently asked me “what is the difference between your list and another one I found that has far more doctors?”  I explained, the other list is patient recommend and carries far less value and credibility.

The reason is that many patients do not even understand what a true MPN specialist is.  Many see their local hematologist or oncologist and think he/she is an MPN specialist because this is the only doctor they have ever seen that will discuss PV, ET or MF with them and treat to the best of their ability.  That is the reason the list has far more doctors.

Click here for a comprehensive, “Doctor Reviewed,” listing of MPN Specialists in the United States.  The list is constantly updated.

Need Someone to Talk to?

Would you like to speak with an Information Specialist to obtain information and resources about polycythemia vera?  The Leukemia and Lymphoma Society’s (LLS) Information Specialists are available 9am-9pm (EST) Monday-Friday via phone, email and chat.

They can assist you through cancer treatment, finding a clinical trial, financial and social challenges and give accurate, up-to-date disease, treatment and support information.  For more information and to contact LLS, click here.

MPN Search

The MPN Search page retrieves pertinent information from “trusted sources”, while leaving behind the mountains of disconnected data that a standard google search brings back.

MPN Search is a “custom search engine” that indexes research data, reports, stories, and news items from some of the best reference sources in the MPN World.

Sources include highly respected sites such as Blood Journal, MPN Research Foundation, Mayo Clinic, MPNforum and more.  If you want to research information on PV, interferon, phlebotomy, Dr. Mesa, Essential Thrombocythemia (ET), Myelofibrosis (MF) or whatever, just click on MPN Search, type it into the search box and you will immediately be served the information you are seeking.  Perhaps, the most comprehensive research tool on the web related to Polycythemia Vera, MPNs, ET, and MF, pulling aggregate data from “trusted authority sites.”

MPN Resources

Numerous MPN Resources can be found here.  Concise listings with one click, easy access.  A growing list with helpful research tools, support groups and information for all MPN patients.  This page offers a broad selection of resources to continue your research.

• Polycythemia Vera Resources
• Co-pay and Medication Assistance, MPN Websites, Airfare, Federal U.S. Benefits (provided by MPN Cancer Connection, our non profit division)
• MPN Patient Conferences and Presentations
• Additional MPN Resources
• Facebook Groups – first hand “shared knowledge” and patient support (request to join)

MPN Discussion Group

This group is for people with myeloproliferative neoplasms (MPNs).  MPNs include Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Myelofibrosis (MF).  Friends, family members and others are also encouraged to participate in the discussion.  The forum is moderated by an MD.  Click here to join the discussion group.

Blog Page (over 80 articles)

The Blog Page provides relevant news items, research reports, “‘patient stories”, presentations, clinical trials and delivers information that will be useful to you, the patient or caregiver, as well as doctors and researchers.  It has been enhanced to include:

• Featured image (main picture from article)
• Full width page for content preview
• Numbered pages for better navigation
• Improved readability

Please be sure to scroll back through the multiple pages, there are many posts that provide tips to improve your quality of life, save you money on prescriptions/co-pays, teach you how to become your own advocate, new MPN treatments and so much more.

MPN News Feed

The MPN News feed provides regular, automated updates on the latest happenings in the MPN World.  Fresh content served with a brief summary, date and news source.  Check it out on a regular basis.  Please be patient as this page draws information from numerous sources.

Patient Stories

Our fellow MPN Patients share their trials and tribulations with Polycythemia Vera, Myelofibrosis and Essential Thrombocythemia.  One of the common themes among patient stories featured is patients must learn about their illness, stay informed and advocate for the best treatment available by seeing an MPN Specialist.

MPN Videos – 2019

MPN Patient Videos – Taralee tells us about Living with PV 

Taralee is a stay at home mom with a chronic blood cancer (PV).  She is making lemonade out of lemons, while sharing personal experiences and tips that have helped her along the way.  You will likely find some great tips and personal insight into living with PV.  Please be sure to consult your physician for medical advice, as this is one patient’s point of view.  That being said, I hope you enjoy her videos, as she provides a down to earth view of living with PV.

• MPN Horizons is a Global conference for MPN Patient Advocates.  I attended the inaugural meeting in 2016 in Belgrade, Serbia, 2017 in Frankfurt, Germany and 2018 in beautiful Prague, Czech Republic.  Delegates attended from Australia, Belgium, Canada, Denmark, Germany, Israel, Italy, the Netherlands, Spain, the UK and the USA, just to name a few.
• Here are the “Highly Informative” slides and videos from the 2017 conference.

E-Patients

MPN Patients can become empowered patients or E-Patients by embracing online patient communities, state of the art research tools and shared experiences.  Armed with the proper information, you can go from a patient intimidated by your doctor to someone who demands to be a partner in medical decision making.  Do you research, the more you learn about your illness and appropriate treatment options, the better armed you will be in advocating for better care.  Know what questions to ask your physician.

Philosophy for Patient Care – Educating the patient is essential, so the patient can guide the physician to meet his or her needs.

ALWAYS get copies of your CBC (blood panel), tests, lab results and records for your files at home.  Don’t be shy, this is your information and it is crucial for you to learn and understand the test results so you can be properly prepared for future appointments.

 Site Goals & Notes

• Make PV Reporter the starting point for your research.
• Social – click the “sharing is caring” buttons at the bottom of each page and help us spread MPN Awareness.
• Well Informed Patients are empowered to make better healthcare decisions.
• Want to share your story? – Drop us a note.

MPN Chronicles Podcasts – Exciting New Content Delivery for 2019!!

Honestly, all I can say is “I tell it like it is!”  You will likely learn some tips along the way and stories you can relate to.  Look for more frequent Podcasts in 2019.