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Oct 23, 03:11
I enjoyed being involved in Patient Patient Power's Charlotte Town Hall meeting at Levine Cancer Institute. 2 outstanding MPN doctors, my nurse and PV, ET & MF patients on the panel. PV Reporter was what else?....the PV patient! These were a few pics I saw on Twitter, I was too busy to take pictures. Stay tuned for more of Andrew's outstanding work once the video is released. You do an amazing job my friend!
Oct 20, 13:01
Hmm....kind of sounds like Polycythemia Vera (PV), only our shit hangs around way too long..!!
Oct 18, 17:28
Is a Cure for Blood Cancer Around the Corner? New Leukemia Research in Phase I/IIa Clinical Trial Biosight, an Israeli pharmaceutical development company that is working on a cure for leukemia, this week closed an investment of $13 million led by pharmaceutical investment firm Arkin Holdings, run by pharma mogul Mori Arkin, and US-based venture firm Primera Capital. The money will be used to fund an advanced phase study of the company’s lead product, Astarabine, for the treatment of AML — acute myeloid leukemia, one of the two most common forms of the disease. – https://mpncancerconnection.org/2016/10/is-a-cure-for-blood-cancer-around-the-corner/
Oct 11, 21:38
October 22 MPN meeting in Charlotte at the Levine Cancer Institute. This is an excellent opportunity to learn from MPN experts, ask questions, tips for living with an MPN and see what's new on the horizon. I will be attending and participating as well - https://www.patientpower.info/event/mpn-charlotte-2016
Oct 07, 02:22
Here is my new post about "Living with a Chronic Illness", be sure to check out Christine's post at the bottom called the "Spoon Theory" - http://www.pvreporter.com/well-you-dont-look-sick/
Oct 01, 16:06
Sep 24, 22:11
Feeling honored to see my article featured on the front cover of the MD Anderson Fall 2016 newsletter. Kate Newberry's, The Research, part 2 in the "Mast Cell Mania" series is covered as well, a nice team effort! - http://www.pvreporter.com/otc-combo-zyrtec-zantac-helping-polycythemia-vera-patients-get-relief-itching/ - Here is the full newsletter in pdf, ready to download: https://www.mdanderson.org/documents/Research-Centers-&-Institutes/Clinical-Research-Center-for-Myeloproliferative-Neoplasia/MPNFocus_Fall2016.pdf
Sep 21, 01:49
Sep 20, 04:44
Ok Charlotte, NC and surrounding area folks this your chance to learn from MPN experts, meet fellow patients and form new friendships at the Levine Cancer Institute town hall meeting produced by Patient Power. I will be participating and hope to see a good turnout. This is a local meeting many area patients have been waiting for. Understanding and Accessing the Best Care for Myeloproliferative Neoplasms (MPNs) Register to attend in-person or live online: www.patientpower.info/Oct22 Saturday, October 22, 2016 Carolinas HealthCare System's Levine Cancer Institute Charlotte, NC As we conclude our MPN town meeting series, you need to hear renowned experts cover ~ Tips for identifying an MPN specialist and accessing quality care ~ Strategies for seeking out clinical trials ~ Resources to manage your symptoms and side effects ~ Advice from patient advocates and survivors that can help you navigate your MPN journey Featured Experts: • Michael Grunwald, MD, Carolinas HealthCare System's Levine Cancer Institute • Srdan Verstovsek, MD, PhD, MD Anderson Cancer Center • Jigar Trivedi, PharmD, Carolinas HealthCare System's Levine Cancer Institute • Erin Hughes, RN, Carolinas HealthCare System's Levine Cancer Institute • David Wallace, Patient Advocate, Founder of PV Reporter
Sep 18, 14:18
Perhaps a controversial view?....keep in mind Dr Mascarenhas is talking about high risk ET & PV. Hydroxyurea probably would not be my first line choice of treatment. You are your own best advocate! http://www.targetedonc.com/conference/soho-2016/managing-highrisk-patients-with-essential-thrombocythemia-or-polycythemia-vera
Sep 16, 13:47
Let's kick off the "New PV Reporter Community Forum." - http://www.pvreporter.com/forum-2/
Sep 15, 01:05
An informative roundtable discussion with our partners Patient Empowerment Network. Let's be heard during Blood Cancer Awareness Month....and year round! MPN patients and caregivers should take a look at a new virtual roundtable discussion hosted by Andrew Schorr, a leukemia survivor who was diagnosed with myelofibrosis in 2012. The discussion also features input from David Wallace, founder and CEO of MPN Cancer Connection and PV Reporter and Michelle Woehrle, executive director of MPN Research Foundation. Dr. Srdan Verstovsek, chief, Section for Myeloproliferative Neoplasms and professor, Department of Leukemia at the University of Texas MD Anderson Cancer Center and Lindsey Lyle, physician assistant at the University of Colorado Denver also joined the discussion. Dr. Verstovsk had this to say during the discussion: “There is a revolution in understanding and treatment of myeloproliferative neoplasms, and that wave is moving forward very fast.” https://www.powerfulpatients.org/learn-more/mpn-awareness-month/
Sep 08, 21:52
On MPN Awareness Day I want to share a very inspiring story from Leona, who subscribed to PV Reporter newsletter back in 2013. She shared the following note with me back then: I have lived with PV for a very long time (almost 25 years), long before there was much information for patients, except I discovered Dr. X long before she became a recognized authority. I was blessed to know her and I believe she prolonged my life by using Interferon early in the course of the illness. (I will be 87 next month) She also stressed patient to patient interaction, being pro active in dealing with the illness, and learning, learning learning. I am personally excited to know that you are affording the MPN Community an additional source of knowledge. Thank you for your dedication and a Healthy New Year. As a follow up just last week (Sept 2016): I reached out to her, thanking her for her support and VERY pleased to report "she is doing well for a gal approaching 90 (in Jan 2017) and living with PV for 27 years! She also added - "the information I have gleaned from the various support groups and online information has truly made the journey possible. I also believe that I, myself have contributed to my good fortune with a healthy diet, exercise, a proactive approach, and using an integrative medical regimen." (She also mentioned being on Anagrelide and Hydroxyurea). There are many positive takeaways here, but the biggest one for me is: PV (MPNs in general) do not always progress and you CAN LIVE A NORMAL lifespan! Thank you Leona for allowing me to share your words of wisdom on our special day, bless you!
Sep 05, 06:50
Seven Gene Signature Depicts the Biochemical Profile of Early Prefibrotic Myelofibrosis An informative read on the 7 gene signature (composed of genes involved in inflammation, immune regulation, cell proliferation, angiogenesis and cell adhesion) - is able to discriminate between genuine ET and early pre-PMF. http://bit.ly/2cdiv28
Sep 01, 05:12
Aug 26, 02:10
Aug 24, 22:06
Nominations are open for the 2016 MPN HEROES® recognition program. You have until September 8th to nominate those who represent the MPN community. This is a first class event....I enjoyed attending in 2014 and 2015, making new friends and personal connections along the way! - https://www.voicesofmpn.com/mpn-heroes.aspx
Aug 21, 16:01
**MPN Search - THE Best Tool on PV Reporter** and the most underutilized (try it out here - http://www.pvreporter.com/search-for-information-on-mpns/. The lack of an external search engine (anywhere) is why PV Reporter was originally created. - http://www.oncologytube.com/v/1033059/mpn-search-video
Aug 15, 07:08
PV Reporer has as awesome mobile app! It's freely available here - https://pvreporter.appsme.com
Aug 13, 15:48
93 percent of the small group of 29 participants with previously incurable or constantly relapsing acute lymphoblastic leukemia have gone into complete remission after undergoing Riddell’s immune cell therapy. ** T cell Therapy shows promise fighting Blood Cancers ** 93 percent of the small group of 29 participants with previously incurable or constantly relapsing acute lymphoblastic leukemia have gone into complete remission after undergoing Riddell’s immune cell therapy. https://mpncancerconnection.org/2016/08/new-treatment-for-cancer-may-provide-hope-to-incurable-patients/
Aug 11, 20:23
David Wallace providing an update on goals, obstacles, funding, 5 year vision and more on interview with our partner PEN (Patient Empowerment Network). You will find more details on what's going on with MPN Cancer Connection (MPN-CC) and PV Reporter. Interview with David Wallace, publisher of the PV Reporter, about starting a new endeavor with his non-profit MPN Cancer Connection (MPN-CC) https://www.powerfulpatients.org/2016/08/10/spotlight-on-mpn-cancer-connection-mpn-cc/