Lung Cancer Updates from 2017 ASCO Annual Meeting

Chemist Jean Cui with some lung cancer patient/advocates who have been treated with drugs she designed

Each year in early June the American Society for Clinical Oncology holds its Annual Meeting (called simply “ASCO”) in Chicago. The theme for the 2017 meeting was “Making a Difference in Cancer Care WITH YOU.” Over 39,000 cancer researchers, clinicians, patient advocates, and industry representatives from around the world gathered to discuss the latest scientific advances in cancer care, such as clinical trial results, new technologies, and best care practices.

WHAT HAPPENS AT ASCO?

ASCO takes place in McCormick Center on Lake Michigan in Chicago—few other conference centers are large enough to host it. My Fitbit claims I average five miles a day walking between sessions!  ASCO fills the hotel rooms throughout the city, some of them nearly 6 miles away, and runs a fleet of a more than a dozen shuttle buses to ferry attendees between their hotels and the conference center.

A typical day for researchers starts around 7 AM and finishes around 10 PM. Many sessions are happening simultaneously, and it’s literally impossible to attend all sessions that mention lung cancer. The poster sessions alone have hundreds of posters to view, and you likely run into people you know either presenting their poster or talking about someone else’s poster. Fortunately, those who register have online access to the videos, slides, and posters so they can catch the sessions they missed.

In addition to conference sessions, attendees can wander a HUGE exhibit hall filled with pharmaceutical firms, biotech companies, publishers, cancer advocacy groups, and vendors of support services.  Many attendees also schedule meetings with current or potential collaborators, funders, and trial sponsors, or are expected to attend one of the many cancer-related committee or steering group meetings that are held at a nearby hotel. Some patient advocates are so busy meeting with their grant recipients, researchers, and scientific advisory board members that they never get to attend a conference session! In the evening, attendees might attend a Continuing Medical Education meeting (complete with a free dinner), a reception hosted by an exhibitor or medical society, enjoy the many activities and entertainments Chicago has to offer, or meet with colleagues they only get to see at ASCO.

Below are highlights selected from over 2400 presentations relevant to non-small cell lung cancer (NSCLC), small cell lung cancer (SCLC), and mesothelioma. For more news from ASCO 2017, check out these resources:

Immunotherapy clinical trials

Lung cancer already has approved immunotherapy drugs, and new drugs are in development.  These drugs are relatively new, and we still have much to learn. Researchers are studying how to detect which patients will be most likely to benefit from them, when they should be used in the treatment sequence, how they might best be combined with other drugs and with each other, how to detect and manage potentially severe side effects, and when to continue or discontinue treatment. Experts are still debating about the value of immunotherapy for patients who have driving mutations.

TARGETED THERAPY CLINICAL TRIALS

Targeted therapy drugs bind to specific mutated proteins in cancer cells and inhibit the cell’s cancer-like behavior, instead poisoning both healthy and cancer cells as chemo does. Those that treat cancer for lung cancer are usually in a group called tyrosine kinase inhibitors (TKIs), and each drug targets genomic alterations in specific genes. In lung cancer, approved TKIs exist for alterations in EGFR, ALK, ROS1, and BRAF genes.  However, many more drugs are in clinical trials to target alterations in other genes such as HER2, MET, TRK, and RET, and research is being conducted on other genomic alterations as well.

Other Treatments

Cancer research involves more than just developing new drugs.  Clinical trials are also used to improve existing treatments.

Diagnostic Testing

Precision medicine means personalizing cancer treatment to a specific patient’s situation as well as their cancer’s characteristics.  In addition to presentations about treatments, ASCO has an increasing number of presentations about ways to identify the best cancer treatment for each patient, and to ensure patients get accurate and affordable diagnostic testing.

  • Biomarkers for immunotherapy: Several presentations explored “tumor mutational burden” (a measure of the number of mutation present in a cancer tumor) as a biomarker to indicate which patients might benefit from immunotherapy.  Other presentations sought to define how PD-L1 should be used to identify patients for immunotherapy. Some blood tests that look for certain proteins may be useful in identifying whether an immunotherapy is working before evidence is detectable on a scan.
  • Biomarkers for targeted therapy: Genomic testing of cancer tumors can identify patients who may benefit from targeted therapy. New technologies and methods are being evaluated to determine the most accurate and cost-effective testing methods. A French study of 1,944 patients (http://www.ascopost.com/News/55703) found widespread genomic profiling was feasible, but not all patients tested positive for a treatable mutation.
  • Liquid Biopsies: Several studies explored the value of ctDNA blood tests (one type of liquid biopsy) for early detection, monitoring patients for progression or recurrence, and identifying tumor characteristics that might be used to guide treatment. Several academic cancer centers are now using liquid biopsies to identify potential targeted therapies for a patient, with the understanding that such tests are have not yet achieved high accuracy. If the liquid biopsy results find an actionable mutation, they will prescribe the associated targeted therapy; if the tests are negative, many experts say they will pursue a tissue biopsy to validate the results. One study that used blood and urine tests to detect the T790M mutation found drug response to a positive tissue biopsy was similar to the response to a positive blood or urine biopsy (http://www.cancernetwork.com/asco-lung-cancer/plasma-urine-tests-can-help-detect-egfr-t790m-mutations-nsclc ).

Patient Care

Treating a cancer patient involves more than just prescribing a treatment that hopefully will shrink a tumor.  ASCO sessions also address ways to make patients more comfortable, deal with psychological needs, and improve communication between patients and healthcare providers. Patient reported outcomes (pat

  • Cost or financial toxicity of cancer care were topics in 174 sessions, some of which included patient advocates as presenters and/or panel members.
  • Goals of care discussions and shared decision making (both of which involve the patient as a member of their own care team) were topics in 21 sessions.
  • Patient reported outcomes (quality of life measures reported by patients to their healthcare providers) were the topic of 112 sessions.
  • Results from a clinical trial of 766 people with advanced cancer showed that a simple web-based tool can help patients live longer. The tool allows patients to report their symptoms in real time and then alerts their health care team if severe or worsening symptoms are reported.
    https://www.asco.org/about-asco/press-center/news-releases/web-based-system-self-reporting-symptoms-helps-patients-live
  • “Conquer Fear” face-to-face therapy program lowered fear of cancer recurrence more than relaxation training provided over the same 10-week period.
    http://abstracts.asco.org/199/AbstView_199_186249.html
  • An 8-week, web-based stress management program called STREAM lowered distress and improved quality of life for people newly diagnosed with cancer.
    http://abstracts.asco.org/199/AbstView_199_187932.html
  • Advanced cancer patients in a talk therapy program called CALM had fewer symptoms of depression and improved psychological well-being than those who received only screening for distress and basic psychosocial care.
    http://abstracts.asco.org/199/AbstView_199_193726.html

This document was distributed at the July 18, 2017 Bonnie J. Addario Lung Cancer Foundation’s Lung Cancer Living Room.

And they said streaming was easy …

I feel so 21st century. I’m streaming my first Amazon Prime movie on our home TV.  Not a bad bit of tech work for a 60-something.

It’s amazing how many choices, purchases, technologies, services, and connections this effort required:

  • research and buy a digital TV (years ago)
  • research and buy a Blu-Ray player (many months later)
  • research and contract with a high-speed Internet service provider
  • upgrade Comcast service to faster Internet
  • order upgraded cable modem from Comcast
  • activate new cable modem and upgrade its software
  • buy new Wi-Fi router with range and bandwidth to reach the TV
  • ensure I have all necessary cables (whoops, another trip to the tech store)
  • set up router
  • wire modem to router and confirm connection
  • set up home Wi-Fi network
  • wire TV to Blu-Ray player and confirm connection
  • connect Blu-Ray player to home Wi-Fi network
  • update Blu-Ray player software (from version 2007 to 2021)
  • use networked PC to subscribe to Amazon Prime
  • install Amazon app on Blu-Ray
  • find Amazon app amidst other apps on Blu-Ray player
  • login to Amazon app
  • use Blu-Ray player find and select a movie
  • start streaming …

… and discover that so many neighbors are streaming movies at the same time on Comcast that your movie won’t play.

Who knew home entertainment could be so complicated?

Good thing fixing healthcare only takes some quick legislation.

Submission Deadline for “Life Between Scans” Anthology is July 1!

Have a story about living with metastatic lung cancer on targeted therapy (as a patient or caregiver)? Submission deadline for the Life Between Scans anthology is July 1!
Submissions guidelines are here:

The value of one father

Photo Credit: personalexcellence.co

In some ways, my father was ahead of his time. An engineer, aviator, inventor, WWII vet, and medical doctor (Ok, he was an overachiever), Dad wanted all of his children, regardless of gender identity, to have a good science, technology, engineering, and math (STEM) education because he believed it would be essential for thriving in the future economic and political landscape. “Education is something that no one can take away from you,” he told me more than once.

Dad (and Mom too) fought school policy to make sure I was allowed to take science instead of being forced to take Home Economics with the other girls. Dad taught me how to use a slide rule, and when my math class did not cover essential concepts–like using π to calculate the area of a circle–he taught me himself (though at the time I would have much rather gone to bed). He advocated so that I and some other advanced students could take algebra and chemistry a year early, which allowed us to cram all the available STEM classes into four high school years. And he made sure that I could afford to attend my choice of colleges that focused on science and engineering.

In his sparse free time (he was a practicing family doctor while working as chief engineer at his father’s company on the side), he showed me how an oscilloscope could analyze an electronic circuit,  taught me how to find the constellations using a telescope, took me and a classmate out in his boat to collect plankton for a science project, and talked to my physiology class about medicine.

True, he missed most every ball game, skipped a lot of music concerts, and often wasn’t home to read to me (thankfully Mom picked up the slack).  True, I had issues with his insistence on perfection and lack of positive feedback. Still, I am the happy, inquisitive science geek I am today in large part because my father made sure my scientific curiosity and abilities were nurtured.

So, thanks, Dad, for believing in me. Despite your humanity and parenting missteps, you made a positive difference in my life. I wish 60-year-old me could talk to you face to face and make sure you knew how much I loved you–and love you still–and reassure you that I know how much you did for me.

To all who have been, will be, or wished they were fathers; who stand in as a loving father figure; or who had or wished they had a good father ….

may you spend Father’s Day remembering or making happy memories.

The start of something big …

I’m excited to be one of the handful of patients speaking in a public forum tomorrow evening at The Broad Institute in Boston, Massachusetts (well, technically, Cambridge). We’ll be sharing our “Lessons for Creating Patient­‐Researcher Partnerships to Accelerate Biomedical Progress.” I get to talk about the founding of the ROS1ders and the Global ROS1 Initiative.

A host of engaged patients, cancer researchers, and other healthcare types, among them the American Society for Clinical Oncology and the Biden Cancer Initiative (which grew out of the Cancer Moonshot) will be there. This could be the start of something BIG. At a minimum, it will spontaneously generate a HUGE group hug with advocate friends old and new.

Coincidentally, we’ll be staying at a hotel just a few blocks from my old MIT dorm during MIT Reunion Weekend.  I’ll be too late for reunion festivities–attending the ASCO Annual Meeting last week took priority.  Still, I’ll wander over on my knee scooter (still healing after foot surgery) in the 90º-plus heat.  I ought to be able to reflect on my crazy undergrad days on Third East in the East Campus dormitory for at least five minutes before seeking refuge inside an air-conditioned building.  Next year I plan to indulge in my 40th MIT Reunion–I didn’t expect to live long enough to see it, and I’m going to take full advantage of the the opportunity!

Happy Silver Anniversary, Gerry!

‪Thanks to cancer clinical trials,  engaged patients, and a devoted spouse, I have lived to see my silver wedding anniversary.

I don’t know which is more amazing – that I’ve lived six years beyond a diagnosis of advanced lung cancer (and currently have no evidence disease), or that two strong-willed, opinionated engineers have shared a house for 25 years without killing each other.  I think the second might be a rarer occurrence.

My cancer diagnosis definitely put a strain on our marriage, and I know Gerry struggled at times as he watched me experience the discomforts, losses, dashed hopes, and side effects of living with lung cancer as a chronic illness. Oddly, cancer has also strengthened our marriage.  It has caused both of us to focus more on what’s really important, to be more tolerant of each other’s idiosyncrasies (we got a lot), and to find more ways to spend time together.

My husband has gradually become more involved in supporting my patient advocacy work. He’s met people that I have helped, and he can see the purpose and meaning it gives me. He said he wanted to help me have that in my life. (sniff sniff) Appropriately, hubby and I going to celebrate our 25th anniversary at the ASCO Annual Meeting in Chicago this weekend. He’ll be escorting me to events since I’ll still using a knee scooter after foot surgery (isn’t he sweet?). We’re hoping he’ll be able to watch me give my first-ever ASCO presentation, despite having only a guest badge.

So, happy anniversary, Gerry.  Thanks for sticking with me for better or worse. Love you!

Gerry and Janet blowing off steam in Yellowstone, 2013.


P.S. I’m not a TOTAL nerd. We will also be celebrating our anniversary with a Mediterranean cruise in the fall.  See, there are really cool historical sites in Rome, Athens, and Israel …

NCI Features the ROS1ders on its CCG Blog

Today the National Cancer Institute published this blog about the ROS1ders on the Center for Cancer Genomics “Insights and Innovations” blog.  The Global ROS1 Initiative is underway!  I’m glad I was able to help share our story.
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ROS1+ Cancer Patients Partner to Increase Research

May 23, 2017, by Janet Freeman-Daily, MS, Eng

In May 2015, I met four friends in a bar near Washington, D.C., to talk about not dying of cancer.

This conversation planted a seed that has grown into The Global ROS1 Initiative, a patient-researcher partnership that is redefining research into ROS1-positive (ROS1+) cancer. The Initiative includes a group of over 150 patients in 19 countries; two patient-focused foundations, Bonnie J. Addario Lung Cancer Foundation (ALCF) and Addario Lung Cancer Medical Institute (ALCMI); academic cancer researchers; and industry. The Initiative includes more than twice the number of patients enrolled in any ROS1 clinical trial thus far.

How did this happen? Let’s return to the bar. Read More …