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.

An edited version will be available soon.

New Survey Available for Patients with Any ROS1-Positive Cancer

You might already know that my cancer is ROS1-positive. This means my tumor cells test positive for a rearrangement of the ROS1 gene in my DNA.

Now we ROS1-positive patients can help researchers learn more about our cancer by taking a survey.  If you’re already sold, click on the link at the bottom of this page.  For more info, read on!

All human cells have the ROS1 gene, but in adult humans the ROS1 gene isn’t very active. However, sometimes the ROS1 gene fuses with another gene and becomes “rearranged.”  Cells that have certain ROS1 rearrangements become cancerous.  ROS1 cancer is rare – about 1% of non-small cell lung cancers – and is found in several types of cancer such as brain cancer (glioblastomas), angiosarcoma, and melanoma.  ROS1 cancer can be very aggressive, but many patients respond amazingly well to a drug called crizotinib, which is FDA approved for ROS1-positive lung cancer.  You can learn more about ROS1 cancer, some of the patients who have it, and available treatments and clinical trials on the ROS1 portal .

Over 100 patients who have ROS1-positive cancer of any type (regardless of where the cancer started) have joined a Facebook group called “ROS1 Positive (ROS1+) Cancer.” We hail from a dozen different countries. We discuss how to handle side effects of treatment, explore the treatments and clinical trials available to us, and post new research findings. And we share concerns about our futures, because … well, those of us with metastatic ROS1-positive cancer are not curable.

I’ve had no evidence of disease (meaning we can’t detect any cancer) on crizotinib since January 2013. I wish I could say I’m cancer free, but I can’t.  For most everyone who takes crizotinib, the cancer eventually develops resistance to the drug, and tumors start growing again.

We ROS1ers need researchers to learn more about our cancer, and find more effective treatments. Now we can do something to help.

PatientDrivenResearch_Final_April 13, 2016

The Bonnie J. Addario Lung Cancer Foundation has partnered with ROS1ers to inform more people about our disease and develop patient-driven research that will hopefully find more effective treatments for us.  Although the ALCF focuses on lung cancer, this effort is addressing ROS1-positive cancer regardless of where in the body the cancer began.

The first step is an online survey that aims to discover what we ROS1ers might have in common and hopefully identify some causes for this rare cancer (the majority of the patients are young, fit never smokers). To our knowledge, this is the first-ever research into the possible causes of a genomically-driven cancer across cancer types.

Please complete your survey ASAP! While the survey will remain open for a long time, the first round of data analysis will commence on July 15, 2016, with a goal of announcing preliminary findings at the World Conference on Lung Cancer in December 2016.

If you have ROS1-positive cancer, please complete this survey.
If someone you know has it, please encourage them to complete this survey.

#LCSM Chat 5/5: Know Before You Go—Conference Prep 101


image by Microsoft Office

Lung cancer patients and advocates are increasingly joining healthcare, pharma, government agency and biotech industry representatives at cancer-related medical conferences such as the American Association for Cancer Research (AACR) Annual Meeting in April and the American Society for Clinical Oncology Annual Meeting in June.

Planning ahead for these meetings is essential for getting the most out of your time. The events, which can last several days, often have many sessions happening at the same time in different rooms. In addition to scheduling considerations, the terminology, graphics, and scientific concepts discussed in the sessions can be overwhelming even for seasoned attendees.

Because no one can possibly attend every conference, attendees share the conference experience by posting tweets while at the conference (called “live tweeting”) about significant happenings and new findings. Often, these conferences have specific hashtags–for instance, those attending the ASCO Annual Meeting this year will include #ASCO16 in their tweets. However, live tweeting from sessions presents some challenges, like condensing new concepts into less than 140 characters, and continuing to follow slides while composing tweets.

In our Thursday May 5 #LCSM Chat at 8 PM Eastern Daylight Time (5 PM Pacific), we will share ideas how attendees might prepare in advance to get the most from a medical conference and share their conference experience with others in real time on Twitter. Janet Freeman-Daily will moderate our discussion using the following questions:

  • T1: What tips do you have for getting the most out of a medical conference? How do you prepare?
  • T2: What concepts would be most helpful for patients/advocates to know before attending cancer conferences? Where can they learn these?
  • T3: What tips do you have for live tweeting a medical conference? What kind of live tweets do you value most?

We hope you’ll join #LCSM Chat on Thursday May 5 at 8 PM EDT. If you’re new to tweetchats, please read this primer on how to participate in #LCSM Chats.

Reblogged with permission from the LCSM Chat website.