Register for the GRACE 2016 Targeted Therapies in Lung Cancer Patient Forum

GRACE EGFR ALK ROS1 Acquired Resistance Forum Faculty 2016-08-20

If you’re a patient or caregiver dealing with EGFR-, ALK-, or ROS1-positive lung cancer, please consider attending the GRACE forum in Denver this August. You’ll learn tons about the latest treatment options and trials, diagnostic tests, and tips for living with cancer as a chronic illness from experts like Dr Ross Camidge (my research oncologist at University of Colorado who started their remote consult program) and Dr Dara Aisner (co-director of CU’s molecular pathology lab that does the tissue testing). Patients Linnea Olson , Tori Tomalia, and Bob Fuerst are on the program, too! If I didn’t have vacation plans with my son, I’d be there for sure.

You can register here: http://cancergrace.org/targeted-therapies-in-lung-cancer-patient-forum-2016-denver-co

#LCSM Chat Topic 6/30: #Cancer Hashtag Communities Talk Moonshot Ideas (Round 2) #cancerchat

As mentioned in a previous blog post (Celebrating Cancer Hashtag Communities and a Moonshot), the online cancer hashtag communities will be discussing ideas for the Cancer Moonshot this week.  The 6/30 #LCSM Chat at 8 PM Eastern will be the second of two chats discussing Moonshot  working group topics for improving cancer research and outcomes.  The 6/27 #BCSM Chat will discuss ideas for three of the seven working groups:  Expanding Clinical Trials, Enhanced Data Sharing, and Precision Prevention and Early Detection.

The 6/30 #LCSM Chat at 8 PM Eastern Time (which occurs the day after the Cancer Moonshot Summits on 6/29) will be a cross-cancer chat about the remaining four Cancer Moonshot Working Group topics:

  • Cancer Immunology and Prevention
  • Tumor Evolution and Progression
  • Implementation Sciences
  • Pediatric Cancer

Participants will use two hashtags for the chat: #LCSM and #cancerchat. Ideas generated during the chat will be submitted online to the Cancer Moonshot.

Our topic questions for this chat:

  • T1: How might we accelerate/improve research into immunotherapy for treatment and prevention of cancer?
  • T2: How might we improve dissemination of info about new approaches for cancer prevention, screening, tx, survivorship?
  • T3: How might we accelerate/improve research into ways that cancer spreads to other parts of the body?
  • T4: How might we accelerate/improve research into drivers and less toxic treatments of pediatric cancers?

We hope you’ll join #LCSM Chat on Thursday June 30 at 8 PM EDT. If you’re new to tweetchats, please read this primer on how to participate in #LCSM Chats.

 

More detail on the Cancer Moonshot working group topics (from the NCI webpage):

Cancer Immunology and Prevention Working Group
In the past few years, the rapidly advancing field of cancer immunology has produced several new methods of treating cancer, called immunotherapies, that increase the strength of a patient’s immune responses against tumors. Such treatments have led to dramatic successes in some cancers but not others. At the same time, the concept of adjusting the immune response, or immunomodulation, is being extended into cancer prevention, with the goal of developing strategies to spur the immune system to both prevent the development of cancer in the first place and prevent recurrence.

Implementation Sciences Working Group
Studying the impact of cancer on large populations can provide important information that influences practices, policies, and programs that directly affect the health of millions of people each year. To improve cancer outcomes, it is essential to identify and test methods for more effectively disseminating information about new approaches for cancer prevention, risk assessment, screening, prognosis, treatment, and survivorship. Interventions must fit within real-world public health and clinical settings and be accessible and understandable to practitioners and the public.

Tumor Evolution and Progression Working Group
Cancer genomics has yielded a greater understanding of the mutations that occur within cancer cells and their roles in tumor initiation and progression. Concurrent with an increased understanding of cancer genomics, a greater appreciation has developed for the enormous heterogeneity of cancer cells that evolve within a tumor, the metabolic changes in both the cancer cell and immune cells in the microenvironment, and the roles of the non-cancer cellular and molecular components of the tumor microenvironment that both support and suppress tumor progression.

Pediatric Cancer Working Group
Children are not just small adults; their cancers are different in many ways from those in older individuals. Improving childhood cancer outcomes requires both a better mechanistic understanding of cancer in general as well as an understanding of cancer in children specifically. Important issues to address include the molecular drivers of childhood cancer, which are often different from those of adult cancers; the causes of childhood cancer; and the development of therapies that are less toxic to children’s developing bodies.

 

Celebrating Cancer Hashtag Communities and a Moonshot

This coming week, the online cancer hashtag communities will be celebrating. Why, you ask? We have two good reasons.

  1. The Cancer Moonshot Summit happens Wednesday, June 29, in DC and in satellite locations all over the US (see DC agenda at bottom of this post). While several of our members will be attending, we all have the opportunity to provide input to the Cancer Moonshot (deadline July 1).
  2. The 5th Anniversary of the beginning of Breast Cancer Social Media (#BCSM)—and the beginning of cancer hashtag communities on the web—happens July 4!

Our celebration will take the form of several coordinated chats open to everyone, regardless of cancer type.

Mon 6/27:
#BCSM Chat (use both #BCSM and #cancerchat hashtags) will host a cross-cancer chat at 9 PM Eastern Time about three of the Cancer Moonshot Working Group topics (check blog on #BCSM website for chat details):
–Expanding Clinical Trials
–Enhanced Data Sharing
–Precision Prevention and Early Detection
Ideas generated can be submitted online to the Cancer Moonshot.

Wed 6/29:
Cancer Moonshot events in DC and satellite locations (see agenda for DC Summit below)

Wed 6/29:
#Hcchat will conduct the official Moonshot chat (use both #Hcchat and #Moonshot hashtags) at noon Eastern Time on the topic “Will the Moonshot lead to the death of cancer?” This chat applies to all types of cancers. Special guest will be Vincent T. DeVita, Jr, MD, who was head of the NCI during Nixon’s Cancer Act and author of “The Death of Cancer.”

Thu 6/30:
#LCSM Chat (use both #LCSM and #cancerchat hashtags) will host a cross-cancer chat at 8 PM Eastern Time about the remaining four Cancer Moonshot Working Group topics (check blog on #LCSM Chat website for chat details):
–Cancer Immunology and Prevention
–Tumor Evolution and Progression
–Implementation Sciences
–Pediatric Cancer
Ideas generated can be submitted online to the Cancer Moonshot.

Thu 6/30:
Last day to submit Moonshot ideas at https://cancerresearchideas.cancer.gov/a/index

Sun 7/03:
#BTSM Chat (use both #BTSM and #cancerchat hashtags) will host a cross-cancer chat at 9 PM Eastern Time about our hopes and dreams for cancer research and treatment in the future.

Mon 7/04:
5th anniversary of #BCSM and cancer hashtag communities

Mon 7/04:
#BCSM anniversary celebration chat at 9 PM Eastern (use both #BCSM and #cancerchat hashtags)

The cancer hashtag communities hope you’ll join us for some (or ALL) of these special events and help us celebrate! To learn more about the cancer hashtag communities, visit http://www.symplur.com/healthcare-hashtags/ontology/cancer/

 AGENDA FOR THE CANCER MOONSHOT SUMMIT IN WASHINGTON, DC


Cancer Moonshot Summit Agenda 1 (CROPPED) Cancer Moonshot Summit Agenda 2 (CROPPED)

Advocacy and the Science of Cancer Research: the AACR Scientist↔Survivor Program

The AACR Scientist↔Survivor Program lets cancer advocates network with scientists driving cancer research

This year I was among the cancer patient advocates who applied for and were selected to participate in the American Association for Cancer Research (AACR) Scientist↔Survivor Program (SSP) .  As part of the program, I attended the AACR 2016 Annual Meeting held April 16-20 in New Orleans, Louisiana.

The program consisted of an orientation day, including an excellent Cancer 101 briefing by Dr. Carolyn Compton; SSP-only sessions in which advocates met with top researchers to discuss specific topics such as immunotherapy and FDA policies; presenting an original poster during an AACR poster session; a group project in which a scientific advisor and an experienced SSP mentor helped us explore a major aspect of cancer research; evening networking events; and, of course, attending the Annual Meeting with cancer researchers.

Posters created by advocates talked about a variety of subjects–cancer journeys, advocacy organization outreach, even personal research projects. My poster discussed the benefits of the Lung Cancer Social Media (#LCSM) community on Twitter–thanks to my fellow #LCSM Chat Core Members for their valuable suggestions and feedback.

JFD with AACR poster

I didn’t understand every presentation in the actual AACR meeting — in at least one presentation I didn’t understand ANYTHING (gene editing is very technical) — but I did come away with a better understanding of the scope of cancer research, some of the issues impeding progress, and a list of topics I wanted to explore further.

I loved listening to researchers explain cutting edge work that … READ MORE

This article was first published 24-Jun-2016 on my Cure Today blog

My Upcoming Appearances: Westercon 69 (July 4 weekend)

Over the 4th of July weekend I will be attending Westercon 69 in Portland, Oregon, where I will speak on three panels and conduct one Kaffeeklatsch. I will also be participating in a lung cancer meetup in Portland on Monday July 4 at 10 AM–please post in the comments if you want to be part of it.

Here is my tentative schedule at Westercon:

How being an engaged patient can save your life (Hawthorne)
Friday Jul 1 5:00 pm – 6:00 pm
Patients around the world are changing the healthcare model by becoming partners in their own care. What is an engaged patient, how can you become engaged, and why should you care?
Ari Goldstein, Ellen Klowden, Frog Jones, Janet Freeman-Daily, Jennifer Willis

Recent Scientific Breakthroughs – What (Lincoln)
Saturday Jul 2 1:00 pm – 2:00 pm
Is it black holes, gravitational waves, global warming, a new species discovered, or something else? Which recent discoveries intrigue you most.
Dan Dubrick, Gregory Gadow, James Glass, Janet Freeman-Daily

Kaffeeklatsch (Multnomah)
Sun Jul 3 11:00 am – 12:00 pm
Small group discussions with authors, artists, and other interesting personalities (referred to as “hosts”) Sessions are limited to the host and a small group of attendees.
Ctein, Daniel H. Wilson, Janet Freeman-Daily, Jeff Sturgeon, Manny Frishberg, Sara Stamey, Sue Bolich

Is Gibson Getting Out of Hand? (Hawthorne)
Sun Jul 3 1:00 pm – 2:00 pm
Is corporate control of research and the drive for short-term profit crippling scientific innovation and basic research? Do established companies always feel threatened by new technology and lobby for legislation to restrict it?
Bob Brown, Frank Hayes, Janet Freeman-Daily, Jim Doty

Cancer Survivorship: It Concerns Lung Cancer Patients Too


For the next three days, I’ll be in The Other Washington (DC) for the 8th Biennial Cancer Survivorship Research Conference. It’s co-sponsored by the NCI, the CDC, American Cancer Society, and the LIVESTRONG Foundation. Time they knew that an increasing number of lung cancer patients have survivorship concerns too!

I’m especially interested in the presentations on economic value in cancer care, financial hardship, oral cancer agents (like mine!), and decision making in palliative care.

Thanks to the University of Colorado Lung Cancer SPORE for sending me (one of their patient advocates) to this meeting.

You can find the agenda and meetings marerials on this site:
http://m.cancer.org/subsites/survivorship2016/

A Plea

People, please.

A terrible tragedy has been perpetrated by anger and hatred. Inflammatory rhetoric, speculation and intolerance will not make it better. Whether speaking to one person in private or to many in a public forum, compassion, reason and facts are sorely needed. Anger is never soothed by more anger.

Please, help reduce your neighbor’s pain and work towards building a sense of community. This is society’s only hope for survival.