- MPN Search is a “custom search engine” that indexes research data, reports, stories, and news items from top reference sources in the MPN World.
- The latest MPN Video Library courtesy of Patient Power.
- Automated News Feed with up to date articles from MPNforum, Patient Power, MPN Research Foundation and more.
- MPN Resources
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/
Aug 09, 18:27
I believe environmental conditions do play a role in acquiring MPNs, along with genetic predisposition. I have always wondered about my water (well) being a suspect.
Aug 06, 17:53
I think our readers can relate to this....certainly exemplifies my personal strategy. From our friends at Patient Power! You can be a #PowerfulPatient by being a "detective" with your doctor! #MemeMonday
Jul 28, 16:30
Physical Activity as a Nonpharmacological Symptom Management Approach in Myeloproliferative Neoplasms: Recommendations for Future Research - http://bit.ly/2a2nLoV
Jul 25, 22:09
**Mast Cells and Histamine in MPN Related Itching Explained** by Kate Newberry, Phd - PV Reporter is very pleased to welcome Kate Newberry, Phd as contributing writer. She is a Senior Research Scientist in the Leukemia Dept at MD Anderson collaborating with Dr Verstovsek. Kate has been working with me on the "Mast Cell Mania" series providing medical commentary, this is part 2 of the series. http://www.pvreporter.com/histamine-mast-cells-mpn-related-itching-explained/
Jul 21, 04:11
*** Pediatric MPNs On The Rise *** The study of MPN in children is far behind the field in adults. This leads to significant frustration for both families and pediatricians who face challenging clinical situations. Our program is trying to change this by developing a comprehensive pediatric MPN center. Focusing on both clinical practice and research, we strive to make significant advances in our understanding of MPN in children – this will allow us to provide families with better guidance and children with better care. We are working to better understand the symptoms children with MPN experience, and are trying to identify causes of these disease and their symptoms. With this information we will be able to create treatment plans specifically designed for children with MPN. Meet Pediatric MPN Expert Dr. Nicole Kucine, MD, MS Assistant Professor of Pediatrics,Pediatric Hematology/Oncology, New York Presbyterian Hospital/Weill Cornell Medicine (I found this on my Newsfeed on PV Reporter homepage - it was posted by Ann Brazeau, CEO of MPN Advocacy & Education. Ann is doing some outstanding work in the MPN World!)
Jul 16, 18:17
This video is outstanding, well worth watching! Dr Silver and Dr Gisslinger in Europe have been using interferon successfully for 30 years. It would be my first medication of choice in the fight against PV. I have been on Pegasys for over 2 years, so I speak from personal experience. As Dr Silver notes the combo, Pegasys with Jakafi (Ruxolitinib) may pack an even more potent punch against the disease. Because of my personal situation (aggressive PV) and positive research reports out of Europe, I decided (along with my physician), that the combo is the best available treatment for me. https://m.youtube.com/watch?v=M6yVH8WFQeg&sns=em
Jul 10, 02:05
An interesting summary from the recent European MPN conference. Two key points: - *** First time research presented that Ruxolitinib (Jakafi) use in PV patients could reduce the JAK2 allele burden. *** - The presence of different mutations impact disease evolution in all MPNs, I expect to hear further details at ASH 2016 in December. It's my opinion that this will eventually evolve into "personalized treatment" for each individual patient based on the their mutational profile. http://www.oncologytube.com/v/1038747/what-s-new-in-myeloproliferative-neoplasms
Jun 28, 12:39
Polycythemia vera (PV) is possibly underdiagnosed using the hemoglobin levels published in the fourth edition, and the utility of BM morphology as a reproducible criterion for the diagnosis of PV is recognized. I have been saying for years (if you read the PV Reporter newsletters and FB posts), PV is WAY under diagnosed, there is no doubt. The World Health Organization (WHO) classification of tumors of the hematopoietic and lymphoid tissues was last updated in 2008. Since then, there have been numerous advances in the identification of unique biomarkers associated with some myeloid neoplasms and acute leukemias, largely derived from g...
Jun 22, 22:32
So we know cannabis is beneficial for cancer induced pain, nausea, increased appetite and numerous other symptoms. Finally we see a detailed study on the benefits of cannabis on reducing inflammation (a key driver in mpns) and apoptosis (cell death). Discussion on successful results in some leukemias, in mice. This area needs to be studied in MPNs. Research in the U.S. is "mired in a political boondoggle" as marijuana is still classified as a schedule 1 drug, along the likes of dangerous drugs like heroin and LSD, tagged as "no benefit in medical use." Perhaps more progressive countries like Spain or Israel will expand research into MPNs and lead the way into a new era of discovery. Cannabinoids are a group of compounds present in Cannabis plant (Cannabis sativa L.). They mediate their physiological and behavioral effects by activating specific cannabinoid receptors. With the recent discovery of the cannabinoid receptors (CB1 and ...
Jun 15, 22:45
***Over the Counter Combo of Zyrtec and Zantac helping PV patients get relief from Itching!*** Part 1 in a Series – “Mast Cell Mania” at the Root of many MPN Symptoms. PV Reporter has always been a collaborative effort, assisted by sharing patients, FB groups, physicians and other MPN organizations. I hope other patients will find this combo to be a helpful treatment for itching. - http://www.pvreporter.com/otc-combo-zyrtec-zantac-helping-polycythemia-vera-patients-get-relief-itching/
Jun 07, 10:00
Continued collaboration with research teams focused on blood cancer benefits patients, and the companies involved will continue their leadership role in the MPN space. Research teams at Moffitt Cancer Center will focus on blood cancers as part of a three-year collaboration with Incyte Corp - http://www.bizjournals.com/tampabay/blog/morning-edition/2016/06/moffitt-collaboration-accelerates-blood-cancer.html?ana=yahoo
Jun 06, 14:39
Good News for MF patients to start off the week! - Five-year Results from Phase 3 Study of Jakafi® (ruxolitinib) Show Sustained Overall Survival Benefit in Patients with Myelofibrosis (MF) COMFORT-I data demonstrate that treatment with Jakafi resulted in a **(31 percent reduction in the risk of death)** and sustained durable spleen volume reduction in patients with MF - http://www.businesswire.com/news/home/20160606005457/en
Jun 02, 22:27
This is an interesting read. I was told very little upon diagnosis, basically "if you have to have a blood disorder, this is the one to have." No mention of the C word and not very comforting. You ARE your own best advocate, become knowledgeable about your MPN and involved in the decision making process. A difficult undertaking for the newly diagnosed, but ultimately a necessity....it's your life. One of the biggest problems we face as oncologists is that we often can’t figure out what our patients would like to know about their prognosis. Even when we ask.
May 25, 04:17
MPN Resources - MPN Cancer Connection (the non-profit arm of PV Reporter) just kicked off "officially" with its new website. Lots of good resources, all in 1 place, to help ease your financial burden. Volunteers and donations are welcomed. The more funding we can raise will result in new, innovative technologies to keep patients informed and to directly help more patients in a personal way. A big thank you to those who have shown their support !! - https://mpncancerconnection.org/resources/