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

My Next Speech: Bringing the Lung Cancer Patient to the Foreground at #ASCO16 CME

peerview grace asco logo

I’m excited to announce that I have been asked to speak on June 5, 2016, at a dinner symposium titled “NSCLC Forum: Bringing the Patient to the Foreground of Evidence-Based Lung Cancer Care.” It’s sponsored by PeerView Press (a medical education provider) and GRACE (a web resource for cancer patients).

This is an evening event concurrent with ASCO 2016 Annual Meeting in Chicago, usually called just ASCO. ASCO (short for American Society for Clinical Oncology) is the world’s biggest cancer conference—just you and 35,000 of your closest friends.  Attendees hear about results for cancer clinical trials along with prevention, diagnosis, survivorship, policy, advocacy, and oncology career info, and explore a huge exhibit hall.  Last year I clocked five miles a day just walking between sessions!

I’ll be talking about using social media to improve outcomes for lung cancer patients.  The meat of the program includes case studies presented by four research oncologists (including, coincidentally, my Denver oncologist Dr. Ross Camidge), and panel discussions. PeerView tells me this may be the first time a patient has been the lead speaker at an ASCO CME (Continuing Medical Education) program. I’m honored that the sponsors and my fellow speakers believe I’m up to the challenge.

At my request, PeerView modified their registration form so patients and caregivers/advocates can register for this event. If you’d like to see me speak, you can register (no charge) to attend in person (and have a free dinner starting at 6:30 PM Central) or watch the live stream online (starting at 7 PM Central).  The recording will be available later on the web (I’ll share the link when it’s posted).  Several other evening events (including the ASCO President’s Reception, alas) will be competing for the attention of ASCO attendees at the same time, so please attend and help fill the seats. Hope to see you there!

 

Edit 8-Jun-2016:

The unedited, uncut version of the 2-hour webinar in which I spoke at ASCO 2016 is available here. You must register, but it’s free. My talk begins at about 2:40, and runs about 10 minutes.

https://tallen.webcasts.com/starthere.jsp?ei=1104671

An edited version will be available soon.

Looking forward: 2016 AACR Annual Meeting and the Scientist-Survivor Program

Microscope

I recently learned I was selected to participate in the American Association of Cancer Research (AACR) 2016 Scientist-Survivor Program!  I’m excited to be attending the AACR Annual Meeting this April in New Orleans.  Thanks to the Bonnie J. Addario Lung Cancer Foundation for sponsoring my application.
I’m looking forward to networking with researchers as well as meeting advocates for other types of cancers to discuss their work.  I’ll also be presenting a research poster on Lung Cancer Social Media (#LCSM) on Twitter, which offer a unique opportunity to connect with all types of stakeholders in the lung cancer community — patients, caregivers, healthcare providers, researchers, hospitals, pharmaceutical companies, advocacy groups, and insurance payers.  Afterwards I plan to blog about the experience and share some of the exciting research presented at the meeting.
After the meeting, I’m going to have a few days vacation to enjoy New Orleans (which I’ve never visited).  I’ll then take The City of New Orleans Amtrak route to Chicago, followed by another train to Boston.  I’ll arrive just in time to present at another conference (GET 2016) at Harvard the next day! I had originally planned to take the Sunset Limited from New Orleans to LA, but after I was invited to GET my travel coordinator (e.g., hubby Gerry) could not find any place where I could disembark along the way and fly to Boston in time for the conference.  After GET, I’ll take a train to Washington DC, where I’ll be a speaker at LUNGevity’s National HOPE Summit.  Whew!
Glad I have willing housesitters who love (and are loved by) the cats.

NCI & #LCSM Chat present a Google Hangout on Air 11/19 at 2pm ET: “Changing Landscape of Lung Cancer Research & Treatment”

[Reblog of 11/15/2015 content from LCSMchat.com — used with permission]

Last year in November, The National Cancer Institute (NCI) and #LCSM Chat worked together to conduct a Twitter chat on precision medicine in lung cancer treatment.  This year, we’ve taken our collaboration a step further to create a highly engaging, interactive online event.

For Lung Cancer Awareness Month this year (#LCAM15), The NCI and #LCSM Chat are excited to announce we will co-host a one hour Google Hangout on Air on “The Changing Landscape of Lung Cancer Research and Treatment” on November 19, 2015 at 2:00 ETYou can watch the Hangout LIVE online by clicking HERE.

During the Google Hangout, we will also be co-hosting a simultaneous #LCSM Chat on Twitter on the same topic to expand on the discussion.  If you have questions you would like answered by the experts in the Hangout, tweet them during the chat (or before) using the #LCSM hashtag.  You can read about how to participate in an #LCSM Twitter chat here.

Our Hangout on Air will be moderated by #LCSM co-founder Janet Freeman-Daily (@JFreemanDaily), who will share questions submitted on Twitter with our three lung cancer experts:

During the Hangout, Dr. Jack West (@JackWestMD) will moderate the #LCSM Chat on Twitter.  The questions in the chat will reflect the topics to be discussed in the Hangout:

  • T1: What new aspects of lung cancer clinical research are you excited about? What’s new in clinical trials?
  • T2: How is translational research different from clinical research? What new projects in translational research are you excited about?
  • T3: What new directions in basic lung cancer research give you the most hope?
  • T4: How can the lung cancer community help researchers to give us more new treatments sooner?

Feel free to tweet questions of the presenters in the #LCSM tweetchat—just include the hashtag “#LCSM” in your tweet.  NCI social media people will collect the questions from the Twitter feed and feed them to Janet so she can ask them during the Hangout.  If you’re not comfortable with Twitter, just post your question in the comment section of this blog post.  We will make sure your question gets added to the list.

It promises to be a lively and vibrant discussion about current lung cancer research, clinical trials, and future treatment options.  We hope you tune in to the Hangout on Air and/or join the #LCSM Chat on Twitter.  If you aren’t able to join us live, don’t worry — the hangout will be recorded and posted on YouTube shortly after the event, and a Storify of the Twitter chat will be posted within a week.  As usual, you can find transcripts of past #LCSM Chats on our “Schedules and Transcripts” page.

After the 11/19 Hangout is over, we’d appreciate your completing a brief survey to let us know what you thought about the Hangout, and what you would like to see in future #LCSM Hangouts. Click here to take the survey.

Please join #LCSM Chat 10/22 at 8PM ET for “Sharing Your Story: Talking Points for #LungCancer Advocates”

Oct_22_LCSMCHAT

As Lung Cancer Awareness Month (November) grows nearer, patients and advocates become more focused on how to raise awareness of our disease. But what should we say to have the most impact? What “talking points” and tips do successful advocates use in writing, interviews, and public speaking?

The October 22 #LCSM Chat at 8 PM ET (5 PM PT) will discuss the most effective ways to share our patient and caregiver stories as we work to raise awareness of our disease in the media, online, and in person. Although our focus will be on lung cancer, the concepts will be applicable to advocates for any cancer or serious disease. Our moderator will be Janet Freeman-Daily, who has spoken to patient groups, industry, researchers, medical meetings, and the President’s Cancer Panel. Other experienced advocates such as LUNGevity’s Katie Brown (@brownbeansprout), lung cancer blogger Tori Tomalia (@lil_lytnin), and breast cancer survivor Casey Quinlan (@MightyCasey) will also share their knowledge.

These topic questions will guide the conversation:

  1. Which aspects of your #cancer experience do you include when sharing your story? How do you make it an interesting narrative?
  2. What key facts about #lungcancer do you ensure you weave into your story? Does this change over time?
  3. Any tips for tailoring an advocate presentation to different audiences, article/speech length, or types of media?
  4. How do you make contact with potential speaking, online and print publication opportunities?

For a primer on how to join #LCSM chat, check out How to Participate in LCSM Chat.

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This content was reblogged from the LCSM Chat website (with permission).

Come Hear me at the GRACE Acquired Resistance Forum for ALK, ROS1 and EGFR Lung Cancer 10/03/2015

GRACE ALK EGFR ROS1 forum graphic

I hope you’ll join me and a host of lung cancer experts on Saturday, October 3, 2015 at the GRACE ALK, ROS1 & EGFR Acquired Resistance in Lung Cancer Patient Forum. I’m on the faculty, speaking about lung cancer patient survivorship.

The forum is for ALK, ROS1 & EGFR lung cancer patients and their caregivers, and will be held at the Marriott Waterfront San Francisco. You can register and read the agenda (with a list of confirmed faculty) online.

At the forum, lung cancer patients can learn about research advances in lung cancers driven by ALK, ROS1, and EGFR. You’ll hear from leaders in targeted therapy research. In addition to presentations and question and answer sessions, attendees will have many opportunities to approach the faculty to speak with them directly. An evening reception after the event will enable additional face time and give attendees – many of whom know each other from online support groups – a chance to meet in real life.

Scheduled presentations include:

  • Acquired Resistance & Why It Occurs
  • Brain as a Sanctuary Site
  • Repeat Biopsies and Serum-Based Testing
  • Selecting Patients for Immunotherapy
  • Quality of Life vs Progression Free Survival – What Are the Most Relevant Endpoints?
  • Patient Assistance Programs
  • Lung Cancer Survivorship

Additionally, breakouts for ALK/ROS1 patients and EGFR patients will cover issues specific to those patients:

  • New Ideas and Treatment Options
  • Individual Treatments for Individual Mutations
  • Combinations to Prevent & Treat Acquired Resistance
  • Drug Sequencing

Registration is $25 per person. GRACE has negotiated a group rate for rooms at the Marriott Waterfront San Francisco of $179 per night (request the “GRACE Patient Forum” room rate).

Hope to see you there!

A patient at a press conference

Earlier today (September 6, 2015) I gave this speech at the International Association for the Study of Lung Cancer (IASLC)  World Conference on Lung Cancer in Denver.  I’m pleased at the reception it received.

JFD speaking at WCLC2015 press conference

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PRC 1

I appreciate IASLC including me in this press conference. They’ve been responsive to lung cancer patients and advocates, and have included the patient voice in several conferences. Patients and advocates participated in the planning process for this World Conference on Lung Cancer, as demonstrated by the number of patient and advocate presentation on the program. This is a first among major oncology conferences, and a step forward for engaged patients.

As the slide says, I’m alive thanks to research, precision medicine, and other patients. My lung cancer journey is a good example of the importance of research, hope, and engaged patients and advocates.

In early 2011, I had a nagging cough [hack hack]. To make my husband happy, I went to see my doctor. After two rounds of antibiotics, and weeks of diagnostic procedures, I was diagnosed with advanced lung cancer with a 3-inch tumor in my left lung. I never smoked anything – except a salmon.

My primary tumor and lymph nodes all responded to chemo and radiation, but two months later, I had a new cancerous hot spot by my collarbone. That became a 3-inch mass in three months. I had more chemo, followed by more radiation. A new scan showed all the known tumors were gone or dead. BUT … I had two new tumors in my other lung. I now had metastatic lung cancer. Whenever I stopped treatment, I had a new tumor within two months. My oncologist told me I would be on chemo for the rest of my life. Fortunately, just after I began treatment, a friend and fellow cancer patient recommended I join an online support group for lung cancer patients.

From other patients, I learned about molecular testing, targeted therapy, and clinical trials. I arranged to have my tissue tested, and based on the results, traveled from Seattle to Denver to enroll in a clinical trial. Thanks to this trial, I’ve outlived my original prognosis by years. I recently celebrated my four-year cancerversary, and have had No Evidence of Disease for 32 months and counting. I am not cured, but I am living well with lung cancer.

PRC 2

I am an epatient. Epatients are not just people who search for health information online. The term epatient applies to any patient who is equipped, engaged, empowered, or enabled. These patients can become equal partners in their own care, working together with healthcare providers to improve their outcomes.

In the online lung cancer community of over 20,000 people, I found patients with my type of lung cancer, on the same treatment, who understood exactly what I was feeling and experiencing. They answered questions I didn’t think to ask at doctors appointments while I was still in shock over my diagnosis. They suggested ways to cope with side effects at home. They prodded me to ask my doctor about issues I hadn’t thought were important. They were available in the wee hours when the fear was overwhelming. They shared online information resources from reliable authorities like the National Cancer Institute.

The information I learned online enabled me to become an interactive participant in my care. From other epatients, I learned to ask for my data, including radiology and pathology reports. I learned about treatment options and typical side effects. I learned about new molecular and genomic tissue testing that doctors in my home clinic did not know about. I learned how to find and participate in clinical trials. And I found hope. If I had not had access to other epatients, I would likely be dead now.

Preliminary studies indicate patient engagement and shared decision making can increase patient satisfaction and outcomes and reduce healthcare costs. Activated patients are less likely to be readmitted within 30 days of hospital discharge, less likely to have poor care coordination across healthcare providers, and less likely to lose confidence in their health care system.

PRC 3

Thanks to research and new treatments, more lung cancer patients are surviving longer and learning to live with lung cancer as a chronic illness. As you’ve heard, this disease still kills more people every year than the other top three cancers combined. Yet lung cancer receives fewer federal research dollars per death than any of those cancers. Why is that? Are lung cancer patients not worth saving?

The answer becomes clear when you google the words “lung cancer people.” No throngs of ribboned supporters; few smiling survivors. You see damaged lungs, death … and cigarettes. Lung cancer has an image problem. The first question I hear when I mention my disease is: “Did you smoke?” People blame patients for getting lung cancer. The breast cancer community has changed how the world sees their disease. The lung cancer community must do the same. Two thirds of lung cancer patients – TWO THIRDS — either never smoked, like me, or quit smoking years ago.

Now that more lung cancer patients are benefitting from new treatments, we can speak out to raise awareness of other risk factors such as radon gas, air pollution, and workplace exposure; fight the stigma of lung cancer, and increase research funding so more of us can live. We are telling our stories and experiences through blogs, social media, and support communities. We are sharing our treatment data in online databases, and collaborating with clinicians and researchers via Lung Cancer Social Media (#LCSM) on Twitter.

PRC 4

The new treatments and screening opportunities arising from research give patients like me many reasons for hope. Early last year, there were no additional clinical trials for people with my type of lung cancer. Now there are at least four other trials. In fact, there are now over 17 actionable mutations for lung cancer. Patients whose tumors have these genomic mutations have options for either approved treatments or clinical trials. In fact, more new treatments have been approved for lung cancer in the past four years than in the previous four decades.

Innovation in cancer care can help more patients get the best possible treatment with easy-to-access medical records for second opinions; accurate early detection methods; affordable genomic testing; simpler searches for clinical trials; new trial designs for small and remote populations; big data analysis of outliers; and more effective ways to share information and hope among all lung cancer patients as well as the public–including those who are not on the Internet.

PRC 5

Engaged patients and advocates are working with clinicians and researchers to accelerate research and improve patient outcomes. Last year advocates were instrumental in obtaining Medicare coverage for lung cancer screening, and a group of lung cancer survivors helped change National Comprehensive Cancer Network guidelines for treatment of metastatic lung cancer. Patients and advocates are supporting the “Don’t Guess. Test.” campaign to encourage more patients to get genomic testing. At this conference, patients and advocates will be discussing their involvement in the NCI’s Lung-MAP precision medicine trial, establishment of support groups, a clinical trial to study lung cancer in young adults, and information that helps patients make choices for treatment and survivorship. In just the past two weeks, a research study began at the University of Colorado lung cancer SPORE to work with family members of patients who died of lung cancer to collect archived tumor tissue from community hospitals and provide it to lung cancer researchers so they can continue to provide hope for this disease. I initiated this project as the SPORE’s patient advocate with support of the Addario Patient and Caregiver Advisory Board.

Thank you for your interest in reporting on lung cancer research. Together we can raise awareness, spread hope, fight the stigma of lung cancer, and improve outcomes for all patients.