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Dec 06, 23:47
Just a few final shots... ASH 2016 is a wrap!
Dec 05, 06:14
Unbelievable!!, the "thick blood" video had over 30,000 views in 24 hours, including all FB groups (thank you). That was essentially the same one used for my appearance on the Doctor's TV show last year. So who wants to help bring MPN awareness into the national spotlight? I have ideas, but need assistance ....I'm already deep into overtime, ha!
Dec 05, 01:08
Dec 05, 00:59
Taking in some MPN posters before the mob arrives :)
Dec 04, 18:43
First interview is around the corner! My "ultra basic" equipment and of course a tripod. Interesting, this is the first year ASH has required "tagging" your camera as camera crew/press pass. Now where is the rest of my crew? :)
Dec 04, 16:34
Progression from PV to MF (20 percent) or AML (5 percent) takes place in 25 percent of patients.
Dec 04, 00:52
The "thick PV blood" demo.... Incyte booth at ASH 2016.
Nov 24, 03:27
International MPN Organizations Page - just added to PV Reporter. If your country is not represented, please list it below. I'm sure to have missed a few :) - http://www.pvreporter.com/international-mpn-organizations/
Nov 21, 23:21
This is not MPN related, but someone may find it helpful. With all of our comorbidities, you just never know. I truly hope we can collectively help MPN patients one day, to the level of service that Virgil received. He wanted to share a sliver of his story, so here it is (thanks for sharing Virgil!) Virgil Anderson was recently diagnosed with mesothelioma cancer, which is a cancer caused by exposure to asbestos. He came in contact with asbestos while working on his family’s farm, but he was mainly exposed during his job as a press operator in the manufacturing of stovetops. Many other groups of people come in contact with a lot of asbestos and are also at risk. When he was diagnosed with mesothelioma he needed immediate medical attention. He found a few websites on the internet that are supposed to help people with mesothelioma cancer but nobody got back to him. Then he found Mesothelioma.net. Even though he contacted them on a Sunday one of their patient advocates gave him a call back within minutes. They gave him a great deal of helpful information on doctors and resources available to him. As a result of their website, he is now being treated at the national cancer institute and the patient advocates have even provided him with financial assistance so he could afford a place to live during his chemotherapy. If he had not reached out to this website he would likely be homeless and more importantly in Hospice waiting to die. These people gave him his only chance at survival.
Nov 12, 11:18
The first annual international MPN Horizons event has been a huge success in my eyes, yes even after one day!! I made friends from across the world... Some who had never heard of PV Reporter or my mission (through MPN Cancer Connection). After hearing their amazing stories of success and sharing a few of my own, I will be creating an "International Partners" page, to bring unity to the international community, while recognizing the work of fellow patient organizations who are equally passionate about their mission .... I heard some awesome stories last night.... With the realization our collective voices will be heard louder if we stand together in unity. Welcome my new brothers, I'm honored to have met you....face to face!
Nov 11, 13:25
Dr Carlos Besses from Barcelona presents the latest research.
Nov 11, 12:41
Kicking off the first annual MPN Horizons conference and making new friends!
Nov 03, 22:31
Incyte will present over 20 abstracts at ASH 2016. Incyte - Jakafi making a strong presence at ASH 2016 with over 20 abstracts! - http://sports.yahoo.com/news/more-20-abstracts-highlighting-data-143200423.html
Nov 01, 12:29
NCCN Publishes New Clinical Practice Guidelines for Myeloproliferative Neoplasms - https://www.nccn.org/about/news/newsinfo.aspx?NewsID=801
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