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 Searcha “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.

MPN specialist cancer treatment centers 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?

LLS logo for PV ReporterWould 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.

MPN Search Engine Research Tool for myeloproliferative neoplasm

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

best resourcesNumerous 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.


MPN Discussion Group

MPN discussion group for myeloproliferative neoplasm patientsThis 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)

MPN blogThe 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

MPN rss feedThe 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.


E-Patients

doctor with stethoscope in laptopMPN 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 yourkeep your own lab results 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


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.  Download episodes on iTunes and please leave us a solid rating!


Instagram Feed

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The Marijuana Papers, my very first article written in 2011. Even more important and timely today, as too many MPN patients have no Legal access to medical marijuana. As cancer patients it makes no sense for us to be "restricted" from this option. Be sure to read the article on PV Reporter. #bloodcancersucks #bloodcancer #resources #cancersurvivor #chronicillness #leukemia #polycythemiavera #essentialthrombocythemia #Myelofibrosis #cancer #hope #treatment #health #positivity #medicalmarijuana #marijuana #naturaltreatment #MPN2019 #cannabis #cannabiscommunity

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Learn the benefits of Becoming your own MPN patient advocate, check out the Podcast on PV Reporter homepage - #bloodcancersucks #bloodcancer #resources #cancersurvivor #chronicillness #assistance #leukemia #learning #know #polycythemiavera #essentialthrombocythemia #Myelofibrosis #cancer #hope #treatment #health #positivity #adventure #advocate

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Beat the itchies with OTC meds, known as the Z and Z combo. This has worked flawlessly for me for 6 years, and many MPN patients as well. Be sure to read the article on PV Reporter - #bloodcancersucks #bloodcancer #resources #cancersurvivor #chronicillness #assistance #leukemia #learning #know #polycythemiavera #essentialthrombocythemia #Myelofibrosis #cancer #hope #treatment #health #positivityiskey #itch #MPN2019 #symptoms #otc #medicine

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Being thankful for the beauty of nature and the peace it brings. Video from my 3 day cycle trip in the mountains. Little did I know after tiny Pensacola (NC), not the beach town in Florida, I would encounter 15 miles of twisty gravel roads down the mountain with no turning back. My body paid for this trip for several days....aches and pains all over, but I wouldn't trade the experience for anything. #doingwhatilove #hope #health #positivity #motorcycles #celebration #inspiration #blueridgemountains #freedom #10yearchallenge #challenger #nature #photography #cancersucks #patientadvocate

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Inspire by Living!  I'm David Wallace, Founder/Publisher of PV Reporter (and CEO of MPN Cancer Connection). Today I celebrate my 10 year anniversary living with Polycythemia Vera (PV) blood cancer.I have definitely had my ups and downs during this journey, but I choose to focus on the positive (as much as possible). In celebration of the big day, I issued myself a challenge to do something I have not done in years.I decided to embark on a 3 day, 790 mile motorcycle trip through the scenic mountains of NC, VA and TN.  My happy place is motorcycle riding where thoughts drift into a peaceful vibe with Total focus on the road ahead.  The trip was 3 days of lively delight (and some hell-raising) with perfect 78 degree Spring weather, flowers and trees blooming with scenic, twisty roads as far as the eye could see.  Upon my return yesterday, I felt renewed and excited that I was up to the challenge and crushed the PV demons!#bloodcancersucks #bloodcancer #resources #cancersurvivor #chronicillness #leukemia #polycythemiavera #essentialthrombocythemia #Myelofibrosis #cancer #hope #treatment #health #positivity #motorcycles #anniversary #celebration #inspiration #blueridgemountains

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Well You Don't Look Sick - A Phrase Commonly Heard by MPN Patients (be sure to read the article on PV Reporter) #bloodcancersucks #bloodcancer #resources #cancersurvivor #chronicillness #leukemia #learning #know #polycythemiavera #essentialthrombocythemia #Myelofibrosis #cancer #hope #treatment #health #positivity #symptoms #pain #fatigue #spoontheory

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Autoimmune Disorders that May Coexist with Myeloproliferative Neoplasms - #bloodcancersucks #bloodcancer #resources #cancersurvivor #chronicillness #assistance #leukemia #learning #know #polycythemiavera #essentialthrombocythemia #Myelofibrosis #cancer #hope #treatment #health #positivity #autoimmunedisease #inflammation

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PV Brain Fog, MPN symptom exposed - #bloodcancersucks #bloodcancer #resources #cancersurvivor #chronicillness #leukemia #learning #know #polycythemiavera #essentialthrombocythemia #Myelofibrosis #cancer #memories #brainfog

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The hell with PV, killer music rocks the soul #deathcabforcutie #cancersurvivor #life #music #cancer

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The PAN Foundation provides medication assistance programs for MPN patients. www.pvreporter.com/pv-reporter-partners-with-pan-foundation-mpn-patient-medication-assistance-programs/ - #MPN2019 #mpnsm #bloodcancersucks #bloodcancer #resources #cancersurvivor #chronicillness #assistance #leukemia #learning #know #polycythemiavera #essentialthrombocythemia #Myelofibrosis #cancer

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Becoming your own advocate is essential to understanding your treatment options and living a better quality of life. PV Reporter is a great place to start learning - #cancer #patient #advocare #polycythemiavera #essentialthrombocythemia #myeloproliferativeneoplasms #myelofibrosis #bloodcancersucks #leukemia #chronicillness #doctor #nurse #bloodcancer #resources

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Great resource to find an MPN Specialist, the list is doctor reviewed. www.pvreporter.com/mpn-specialists-cancer-treatment-centers/ - #mpn2019 #MPNSM #specialists #polycythemiavera #myelofibrosis #essentialthrombocythemia #bloodcancer #bloodcancersucks #resources #cancer #leukemia #knowledge

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