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.

Life Between Scans: Call for Submissions

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We are happy to announce a new upcoming anthology tentatively titled “Life Between Scans: How to Live with Lung Cancer as a Chronic Illness.”  Its personal essays will show how metastatic lung cancer patients and their loved ones cope with the emotions and situations that arise when you’re taking new precision medicine treatments and know your lung cancer could become terminal at any time.

A group of award-winning lung cancer bloggers is developing this book to share honest personal experiences, offer hope for those dealing with metastatic lung cancer, raise awareness and positive impressions of our disease, and encourage investment and participation in lung cancer research and supports.  These stories will highlight lung cancer patients on precision medicine approved drugs and clinical trials who are living well for months or years longer than those on traditional chemotherapy.

All submissions will be reviewed by the group, with assistance from editor Ann Vandermeer, who has extensive anthology publishing experience both for New York publishers and as a freelancer. Ann has graciously donated her time to this project in support of cancer patients.

Example Essay Topics (not a complete list)

  • The shock of diagnosis or cancer progression
  • Handling stigma and guilt
  • Taking care of yourself (as patient, or as caregiver)
  • Telling (or not telling) others about the cancer
  • “Why me?”
  • Making the choice to live despite the downsides
  • What matters most now? How has that changed after cancer?
  • Making major treatment and care decisions
  • Finding the next step for treatment
  • Why you did (or didn’t) join a clinical trial
  • How manage emotions: anxiety, fear, uncertainty, depression, need for control
  • Becoming an engaged patient or advocate
  • Dealing with symptoms or side effects (pain, cognitive issues, losses, etc)
  • Having “The Conversation” with family about end of life
  • Being the first on a new treatment
  • When your doctor doesn’t have much experience with your treatment or cancer
  • Finding supports or dealing with loss of supports (e.g; loss of friends)
  • Use of complementary therapies (massage, acupuncture, meditation, etc.)
  • Transitioning to hospice
  • Navigating the healthcare system (e.g., coordinating specialists)
  • Effective communication with healthcare providers
  • Value of patient communities
  • How to stay on top of science and research without getting overwhelmed
  • How do you forget about cancer and enjoy life in the moment?
  • Role of the care partner in chronic disease management
  • Financial toxicity
  • How can caretakers and patients both speak honestly about how they feel?
  • Humor as a diversionary/coping mechanism

Submission Deadline

July 1, 2017

Submission Guidelines

  • Essays should be between 750 to 2,500 words. Accepted file types are MS Word, .rtf, and .txt. Please use 12 point Times New Roman font, double spaced, and ensure your legal name is included at the beginning of the file.
  • Essays must be written in first person, and should reflect actual personal experience of either a metastatic lung cancer patient or a primary caregiver of a metastatic lung cancer patient.
  • Essay can be either original work not previously published, or material you personally published on your online blog or in an online support group.
  • Essays from deceased patients may be submitted if the patient meets the criteria above AND the person who is submitting can demonstrate they have the legal right to submit the essay.
  • If a metastatic lung cancer patient/caregiver blog post has touched or inspired you, please submit a link via email so we can review it and contact the author.
  • Each submission will receive an email acknowledging its receipt

Rights and Payments

  • Acceptance decisions will be made by late summer 2017. If your submission is accepted, you will be notified by email along with a contract for consideration.  If you do not receive a notification by the end of September 2017, your work was not accepted for publication.
  • We will pay $0.10/word on final edited word count for nonexclusive worldwide right to print, republish, or reprint the complete anthology in any language or format. Payment will be made upon final edit.
  • Contributors will receive two copies of the book.
  • If authors have other questions about rights or payments, please contact us before submission. We want to make sure all concerns are addressed.

How to Submit

Send an email to lifebetweenscans@gmail.com and include the following:

  1. Your personal essay (as an attachment)
  2. A BRIEF biography (no more than 100 words) for inclusion in the book. At a minimum, this must include:
    • your name (a pen name is OK, but a real name will have more impact for readers)
    • date of diagnosis
    • type of lung cancer (as specific as possible)
    • where you live (state & country, with city if possible)
    • link to your blog or website (if you have one)

    You might also want to include your age at diagnosis, relationship status (married, single, committed partnership, etc.), ages of children at diagnosis, and clinic(s) where you were treated. This information can help inspire readers.

  3. For payment purposes, please provide the following in the body of the email:
    • your legal name
    • mailing address
    • preferred contact email
    • contact phone

Please be sure the contact email and/or phone will be answered even if you are unavailable.

Where will the book be published?

We are negotiating with a small press to get the book published.  We expect the book will be available in hardcopy and in electronic format from online sellers.

What will happen to the income from book sales?

One of our bloggers is funding this project personally. After the payments to authors and production costs are covered, proceeds from the sale of the book will be designated in perpetuity to support lung cancer research at the University of Colorado, one of the premier targeted therapy lung cancer research centers in the world.

Who is on the editorial board?

In alphabetical order:

Last update: 6-Mar-2017 16:00 Pacific Time

#CureChat 1/12: A conversation about precision medicine and clinical trials

curechat-graphic

I am honored that I was asked to be the featured guest for the #CureChat on Twitter this Thursday, January 12th, 2017 at 1 pm ET.  We’ll be talking about precision medicine and clinical trials.  You can read more about it on the Cure Forward blog.  Hope you can join us!

Chat Topics (from the Cure Forward blog):

T1. Janet Freeman-Daily’s Story (my lung cancer story, told 140 characters at a time)

T2. What does the term “precision medicine” mean to you and how does it connect to clinical trials?

T3. Tell us about the ROS1 Mutation.

T4. What were your biggest fears and misconceptions about clinical trials before finding out about them via an online community?

T5. How did it feel to be accepted into a trial? What emotions, and why? And how did you manage them?

T6. What are some of the positive aspects of clinical trials that most people don’t know about?

T7. Please share some online resources where you find trustworthy info for lung cancer and clinical trials.

You can follow the conversation in Twitter by entering “#CureChat” in the search box to filter tweets.  However, if you haven’t joined a tweetchat before, you may find the conversation easier to follow if you use a tool designed for tweetchats, such as tchat.io.  To use tchat.io, do the following:

  • Login to Twitter (you must have a Twitter account to do this)
  • Type “tchat.io” in the URL of your browser, then hit the “enter” key. The tchat.io entry page will appear.
  • Type “#CureChat” in the box that says “enter hashtag,” then left-click on the colored box that says “Start Chatting.” You will be taken to a page that has a big blank textbox at the top, and a list of recent tweets that contain the hashtag “#CureChat” below.
  • Left-click on the link just below the textbox that says “sign in.” A popup window will ask if you want to authorize tchat.io to access to your Twitter account. Left-click on the box that says “authorize app.” You will return to the tchat.io page.
  • Left-click on the link above the textbox that says “hide retweets.” This will eliminate duplicate tweets and make the conversation easier to follow.

Now you can follow the #CureChat conversation on the tchat.io page.  If you want to contribute to the conversation, type your own tweets into the textbox at the top of the page.  Tchat.io will automatically add the hashtag #CureChat to the end of your tweet so your tweet will appear in the conversation.

However you choose to follow the chat, if you want to respond or direct a question to someone in the chat, be sure to include their Twitter handle (e.g., @JFreemanDaily is my handle) at the beginning of your tweet.

Thanks to Liza Bernstein (@itsthebunk) and the Cure Forward team for inviting me to be their guest in this chat.  I look forward to seeing you on Thursday!  I will post the link to the Storify summary of the chat HERE once the Cure Forward team posts it.

 

Who are Cancer Clinical Trials For? (a reblog)

Cancer clinical trials can be a good treatment option.  Today I’m giving a signal boost to a great post on CURE Today by my amazing clinical trial oncologist, D. Ross Camidge, MD, PhD, at University of Colorado.  He’s written a nice overview of the benefits and pitfalls of cancer clinical trials for patients.

Who are Cancer Clinical Trials For: Guinea Pigs, Test Pilots or Prize Poodles? 

Precision medicine treatment update for advanced NSCLC (Dec 2016)

If you have been diagnosed with advanced non-small cell lung cancer (NSCLC), please read this blog post.  It could buy you months or years of good living.  Lung cancer treatments are advancing so fast that your cancer doctor may not know this information–even if they are at a major academic cancer center.

Scientific evidence is accumulating that genomic testing and targeted therapies for cancer patients who have advanced non-small cell lung cancer make a significant difference in outcomes.  By “significant difference,” I mean a year or more of survival with good quality of life.  Genomic testing and a targeted therapy have given me no evidence of disease for four years despite my metastatic lung cancer.  Now THAT’s is a significant difference!

Genomic testing looks at the cancer cells DNA for alterations in certain genes that may be driving the cell to act like cancer.  FDA-approved drugs are available that can target some of these driver genes (EGFR, ALK, and ROS1) and inhibit the cancer–these drugs are called “targeted therapy.”  Targeted therapy for other driver genes are available through clinical trials.  These drugs do not cure, but they are usually more effective and more tolerable than chemo.  Not every NSCLC cancer will have a driver gene, and not every driver gene has an effective treatment.  However, it’s worth investigating, because about 60% of NSCLC adenocarcinoma patients likely DO have a driver gene that can be targeted with an approved or experimental drug (per the LCMC II study).

Guidelines from the College of American Pathologists (CAP), the International Association for the Study of Lung Cancer (IASLC), and the Association of Molecular Pathologists (AMP) recommend analyzing either the primary NSCLC cancer tumor or a metastatic tumor for EGFR and ALK, regardless of patient characteristics (such as age, race, or smoking history). The National Comprehensive Cancer Network guidelines for metastatic non-small cell lung cancer strongly recommend testing for alterations in EGFR, ALK, and ROS1 genes, as well a broader genomic panel to look for driver genes that might have clinical trials available.

A recent article is a great reference on this subject for both physicians and for patients who want to learn more about their options.  It discusses evidence-based molecular testing options, driver genes, and available targeted therapy options, including off-label use of FDA-approved drugs for patients whose cancer mutation does not yet have an approved treatment. It also provides references to professional society guidelines and key journal articles.  The authors are Lecia V Sequist, MD, MPH (Associate Professor of Medicine, Harvard Medical School–an EGFR superdocs and a member of LUNGevity’s Scientific Advisory Board) and Joel W Neal, MD, PhD (Assistant Professor of Medicine–Oncology, Stanford University/ Stanford Cancer Institute).

Those of you with advanced NSCLC might want to share the article with your cancer doctor.

Personalized, genotype-directed therapy for advanced non-small cell lung cancer by Lecia V Sequist, MD, MPH, and Joel W Neal, MD, PhD

Research and new treatments are moving faster than most cancer physicians can track.  Patients with advanced NSCLC can increase their chances of survival if they learn more about their disease.  I hope this blog helps you do that.

Four years on a cancer clinical trial, and still NED–yay for research and hope!

Four years ago today, I took my first dose of crizotinib in a clinical trial for patients who had ROS1-positive lung cancer. My first scan–and every scan thereafter, including this past Monday 10/31– has shown no evidence of disease (NED). Not bad for a metastatic lung cancer patient who previously progressed on two separate lines of combined chemo and radiation.

I’m very grateful for cancer research and the availability of clinical trials. We’ve had more new drugs approved in the past five years than in the previous five decades!

During November, which is Lung Cancer Awareness Month (#LCAM on Twitter), please consider donating to your favorite lung cancer research facility (one option is the Lung Cancer Colorado Fund at the University of Colorado) or a lung cancer advocacy organization that supports research. 

And for a bit of hope, check out the NEW LCAM website, which represents a partnership among 19 lung cancer advocacy organizations led by the International Association for the Study of Lung Cancer (IASLC).

 
lcam-multi-color-logo

HOPE LIVES! More research. More survivors.

A Natural Remedy for Cancer Scanxiety (Almost)

When basking in the wonders of volcanoes, rainforests, and oceans, I can focus on something other than cancer for a while.

When heading to a cancer center for brain and body scans, not so much.

Still, facing the possibility of progression is easier when I’ve been immersed in nature for a few days.  I suspect most cancer patients might benefit from a “nature break” to combat scanxiety before a scan.