#LCSM Chat Topic for 12/18 8PM ET: A Year-End Focus on the Highlights of 2014

For our last #LCSM tweet chat of the year, this Thursday, December 18th at 8 PM ET/5 PM PT, we’ll do a retrospective reflection on the biggest developments of 2014. It was a pretty good year for lung cancer, so I’ll offer up my view of the top 5 changes over the past year and welcome group discussion on whether these fall in line for others.

Dr. West’s Top 5 Highlights in 2014

1. Rapid development of immune checkpoint inhibitors for lung cancer: We haven’t seen a PD-1 or PD-L1 inhibitor approved by the FDA for lung cancer yet, but immunotherapies have only continued to gain momentum and street cred as multiple new agents show comparable activity in a subset of patients. Though it’s not most patients, the ones who respond often respond very well and for a very long time. Multiple companies are tripping over themselves trying to study these immune checkpoint inhibitors in every clinical setting and in combination with every other treatment for lung cancer. These agents are approaching escape velocity for lung cancer.

2. We broke the impasse against acquired resistance for both ALK and EGFR mutation-positive patients: The FDA approved Zykadia (ceritinib) for XALKORI-refractory ALK-positive NSCLC, and the evidence shows it is even more active for XALKORI-naïve patients. It also has clear activity against brain metastases, an Achilles heel for XALKORI over the past several years. Now with multiple generally well-tolerated and very active additional second generation ALK inhibitors moving through clinical testing, we are at the cusp of having an enviable choice of options and potentially soon being able to select particular agents for particular ALK mutations.

Though we don’t yet have a new agent for acquired resistance in EGFR mutation-positive disease commercially available, both AZD9291 and rociletinib (CO-1686) broke out as among the biggest stories at ASCO 2014. The trials with these agents are rolling out worldwide, and we should hope and expect to see one of these become commercially available in the not too distant future.

3. Genomic testing goes mainstream: Though broad “multiplex” testing of a multitude of genes in one panel hasn’t yet delivered on its great promise, since there aren’t yet enough “actionable” mutations to help most patients, this testing, as offered by Foundation Medicine, Caris, and many other large labs is rolling out everywhere. I see this as a big investment in the short term and long term future for cancer treatment. Without knowing exactly where it will lead us, the availability of broad multiplex molecular testing and “next generation sequencing” platforms make most people treating cancer feel that we’re entering a new era of both understanding and treatments matched to the cancer. It will also lead to a new classification of cancer based more on the mutation(s) seen in the cancer than the anatomic definition of a cancer based on its tissue of origin.

4. Modest gains for big populations with advanced non-small cell lung cancer: The median survival benefit seen with the addition of Cyramza (ramucirumab), an antiangiogenic antibody administered every 3 weeks, to Taxotere (docetaxel) on the REVEL trial can’t be considered revolutionary, seeing any treatment move the needle for previously treated patients is a welcome change. This is especially true when this approach includes the oft-excluded patients with squamous NSCLC. The study was enough to lead to the approval of Cyramza in lung cancer by the FDA just in the last few weeks. This year also saw the approval in the EU of Vargatef (nintedinib), an oral anticancer therapy that also blocks angiogenesis, in combination with Taxotere for patients with advanced lung adenocarcinoma, based on an approximately 2 month improvement in median survival with the combination of Vargatef with Taxotere on the large phase III LUME Lung-1 trial.

5. CMS approves low dose chest CT (LDCT)screening for high-risk Medicare patients, with stipulations. After a year of active debate and campaigning over the cost and anticipated benefits vs. risk of widespread screening of higher risk patients (age 55-74, 30 “pack-year” or greater smoking history, current smoker or quit in last 15 years), the Center for Medicare and Medicaid Services (CMS) finally voted to approve LDCT screening for the specific population studied in the large NLST study that demonstrated a significant survival benefit. This approval was accompanied by unprecedented restrictions that included a strict mandate about patients conforming to the age and tobacco exposure requirements specified, including detailed counseling about the high potential for ambiguous lung nodules and the need for smoking cessation counseling, and a restriction of approved LDCT screening to the centers that had developed experience with it in earlier screening trials.

There has been significant debate about whether these limitations will do more to enforce best practices and high quality screening or serve as a barrier for appropriate candidates to pursue screening. This debate also includes questions of the true intent of the seemingly lofty goals, which should help to also limit costs for coverage. But seeing validation of the concept of LDCT screening for appropriate patients after so much skepticism represents a victory for the lung cancer community that will definitely lead to a reduction in deaths from lung cancer and a shift to far more patients being treated at an earlier stage of disease.

Please join us for this important last #LCSM chat on Thursday – we’d love to learn your perspective about these topics and others that you think should be considered as major highlights in lung cancer in 2014. And after a break on New Year’s Day, we’ll pick up again on January 15th with a chat that focuses on predictions and a wish list in lung cancer for 2015.

Check it out Thursday, December 18th, 8 PM ET/5 PM PT at http://www.tchat.io/rooms/lcsm or filter by #LCSM on twitter and add it to your tweets during that hour. Hope to see you then!

#LCSM Chat Topic for 12/4 8PM ET: “CMS lung cancer screening rules: overboard, or on the mark?”

The topic for #LCSM Chat on Thursday, December 4, 2014 at 8PM ET will be, “CMS lung cancer screening rules: overboard, or on the mark?”  Our moderator Janet Freeman-Daily (@JFreemanDaily) will lead our discussion using the topics below. You can learn more about #LCSM Chat and how to join it here.

  • T1: Do you agree with patient characteristics defined in CMS proposed lung cancer screening coverage?
  • T2: Do you agree there is potential harm in lung cancer screening at centers that don’t have counseling or extensive experience?
  • T3: Will CMS limitations channel patients to most qualified centers, or instead keep patients from lung cancer screening?
  • T4: Are limitations on lung cancer screening fair & appropriate compared to screening for other cancers?


On November 10, the US Centers for Medicare and Medicaid Services (CMS) issued a proposed decision to cover low dose chest computerized tomography (LDCT) lung cancer screening for high-risk patients.  CMS is accepting comments on this proposed decision for 30 days, and will issue its final decision in February 2015.  Private health insurance policies that fall under the Affordable Care Act (ACA) are required by law to cover lung cancer screening with LDCT as of January 1, 2015.

The lung cancer community had worked towards this outcome for many months.  Over 70 professional societies, medical centers and universities wrote a joint letter to CMS in support of lung cancer screening; in it, they cited considerable medical evidence, and outlined the conditions under which screening should be implemented.  Eighteen lung cancer advocacy organizations wrote a joint letter supporting the Joint Societies letter.  A team led by the American College of Chest Physicians presented a policy to CMS on “Components Necessary for High Quality Lung Cancer Screening.”  The collaborative effort behind this decision was huge, and the entire community celebrated the proposed CMS decision.

According to Dr. Gerard A. Silvestri, President-Designate of the American College of Chest Physicians, lung cancer screening will save one life for every 256 people screened.  That’s similar to the stats for mammography.  He believes the greatest challenge in making lung cancer screening widely available is having programs available to manage nodules detected during screening.

Lung cancer screening is not without risk:  it’s likely to detect one or more nodules that may or may not be cancer.  If a nodule is found, the doctor may recommend follow-up imaging–doctors can use subsequent CT scans to determine whether a nodule is growing.  However, assessment of a nodule might require an invasive intervention like a biopsy, which might discover the nodule was not cancer.  To minimize harm to patients, only patients at high risk for lung cancer should be screened.  For now, that means never smokers are not eligible for screening because they are much more likely to have benign nodules than cancer.

Given recent controversy regarding screening criteria for other cancers, a key component of the CMS decision is to ensure the benefits of lung cancer screening outweigh the risks.  To reduce the risk, the proposed CMS decision sets specific restrictions on LDCT coverage:

  • Screening must be done at accredited facilities;
  • Scans must be interpreted by radiologists who meet certain requirements;
  • Patients must be: asymptomatic (have no symptoms of lung cancer), between the ages of 55-74, current heavy smokers or former heavy smokers who quit within the past 15 years, and healthy enough for surgery;
  • Patient must participate in counseling and shared decision making about the benefits and risks of screening, as well as smoking cessation (if appropriate); and
  • Screening results must be entered into a central registry.

Depending on one’s perspective, the proposed CMS decision can be seen as providing safeguards necessary to minimize the risks of lung cancer screening, OR as creating barriers that might keep high-risk patients from getting screened.  Some reviewers (e.g., Otis Brawley of the American Cancer Society) think CMS struck just the right balance between benefits and risks.  Others in the lung cancer community have raised concerns that the proposed decision is too restrictive.

Examples of concerns that have been raised about the decision are:

  • The CMS proposed decision sets 74 as the upper age limit for screening. Yet a recently-published study of a validated lung cancer risk model found the highest lung cancer risks were in people aged 65-80. NCI statistics say the 75-84 age group represents 27.9% of diagnosed lung cancer cases. Should the age limit for screening be higher, perhaps age 80?
  • The symptoms of lung cancer can be subtle (e.g., tiredness or a cough) and similar to symptoms of other conditions such as COPD or medication side effects. What does an “asymptomatic” patient look like in this context?
  • Requiring screening centers to be accredited reduces the risk of mistakenly labeling a benign nodule as cancer. However, the cost and effort of obtaining accreditation may limit the availability of affordable lung cancer screening to the CMS population. How can we make quality lung cancer screening widely available?

Thanks to Andrea Borondy Kitts and Dr. Jack West for their contributions to this blog post.


  1. Centers for Medicare and Medicaid Services. Proposed Decision Memo for Screening for Lung Cancer with Low Dose Computed Tomography (LDCT). Accessed 12/2/2014 at http://www.cms.gov/medicare-coverage-database/details/nca-proposed-decision-memo.aspx?NCAId=274
  2. Joint Societies. (26-Sep-2014). Letter to CMS. Accessed 12/4/2014 at http://www.acr.org/~/media/ACR/Documents/PDF/Advocacy/Fed%20Relations/LCS%20Stakeholder%20Letter%2009%2026%2014_FINAL.PDF
  3. Lung Cancer Alliance. (8-Oct-2014). Letter to CMS. Accessed 12/4/2014 at http://www.lungcanceralliance.org/Screening/CMS%20/CMS-Letter-FINAL%20Lung%20Cancer%20Patient%20Advocacy%20Organizations.pdf
  4. American College of Chest Physicians. (30-Oct-2014). CHEST lung cancer experts present policy statement to CMS Committee on Coverage. CHEST website. Accessed 12/4/2014 at http://www.chestnet.org/News/Press-Releases/2014/10/CHEST-lung-cancer-experts-present-policy-statement-to-CMS-Committee-on-Coverage
  5. Brawley, O. (13-Nov-2014). CMS Got it Right in Lung Cancer Screening Coverage Decision. The Cancer Letter. Accessed 12/3/2014 at http://cancerletter.com/articles/20141114_2
  6. Tammemägi MC, Church TR, Hocking WG, Silvestri GA, et al. (2-Dec-2014.) Evaluation of the Lung Cancer Risks at Which to Screen Ever- and Never-Smokers: Screening Rules Applied to the PLCO and NLST Cohorts. PLOS Medicine. DOI: 10.1371/journal.pmed.1001764 Accessed 12/4/2014 at http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1001764
  7. National Cancer Institute. SEER Stat Fact Sheets: Lung and Bronchus Cancer. (No Date). Accessed 3-Dec-2014 at http://seer.cancer.gov/statfacts/html/lungb.html

#LCSM Chat Topic 11/20 (8 PM EST): Know Your Radon Risk

What action would you take to protect your family if you suspected a killer was in your home?

Radon gas is odorless, colorless, and classified as a human carcinogen by the World Health Organization, US National Academy of Sciences, US Department of Health and Human Services, and US Environmental Protection Agency (EPA).
Approximately 21,000 Americans will die from radon-induced lung cancer this yearIndoor exposure to radon gas is the second greatest known risk factor for lung cancer.  Radon exposure is a threat significant enough that nine federal agencies worked together to release the Federal Radon Action Plan in 2013.

The topic for our November 20 #LCSM Chat (8 PM EST) will focus on understanding what radon gas is, how to determine your risk, and how to reduce your risk at home.  For this chat, we will be joined by some special guests:

Our moderator Janet Freeman-Daily (@JFreemanDaily) will lead our discussion using the topics below.  You can learn more about #LCSM Chat and how to join it here.

T1:  What is radon gas? Why should we care about it?

T2: How can people determine if radon is a concern for them?

T3: How can people reduce indoor radon gas levels in their homes and businesses?

T4: How can we help more people learn about dangers of radon gas and how to reduce their risk?


Thanks to Dusty Donaldson of the Dusty Joy Foundation for help with researching information for this post.

#LCSM Chat tweets for Lung Cancer Awareness Month (#LCAM14)

During Lung Cancer Awareness Month this November (#LCAM14), #LCSM Chat (@lcsmchat on Twitter) will post daily tweets following the schedule below.   All times are Pacific.

6 AM:    lung cancer fact or statistic (check our list of ready-made tweets)

10 AM:  research or new treatment info (written or video)

2 PM:    inspirational survivor story (written or video)

6 PM:    #nostigma statements and/or #WhipLungCancer videos

Some of our tweets will be new, some will be tweets we’ve posted in the past, and some will highlight tweets posted by others in the lung cancer community.

Please consider sharing posts by @lcsmchat and others in the #LCSM community via tweets and other social media to help raise awareness of this deadly disease and generate support for lung cancer patients and research.

Remember:  ANYONE with lungs can get lung cancer.

Special #LCSM Chat Topic 11/05 1 PM ET: @TheNCI hosts chat on precision medicine in lung cancer

#LCSM Chat is pleased to announce a special #LCSM Chat for Lung Cancer Awareness Month will be held on WEDNESDAY, November 5 at 1 PM Eastern Time (NOT our usual day and time). The National Cancer Institute (@theNCI) and a panel of experts will be using the #LCSM hashtag to talk about exciting new lung cancer treatment options!

This chat will be in question-and-answer format, with a panel of experts addressing specific topics posed by @theNCI as well as fielding audience questions related to those topics. This format is great for patients, caregivers, medical personnel and advocates regardless of their previous experience with tweetchats.  We hope you’ll join us!  (Check out our refresher on how to join a tweetchat)

Below is NCI’s announcement about the November 5 Chat.

On Wednesday, November 5 from 1:00-2:00 ET, the National Cancer Institute (@theNCI) will be hosting a Twitter chat on precision medicine in lung cancer using the #LCSM hashtag.

We’ll have a “who’s who” of precision medicine lung cancer experts on the chat, including:

  • Dr. David Gerber, Lung Cancer Specialist, UT Southwestern Medical Center
  • Ryan M. Hohman, JD, Managing Director, Policy & Public Affairs, Friends of Cancer Research
  • Dr. Shakun Malik, Head, Thoracic Cancer Therapeutics in the Clinical Investigations Branch of the Cancer Therapy Evaluation program at the National Cancer Institute
  • Kim Norris, Founder/President, Lung Cancer Foundation of America
  • Dr. Geoffrey R. Oxnard, MS, Instructor in Medicine, Harvard Medical School
  • Dr. Vassiliki Papadimitrakopoulou, M.D., Professor, Department of Thoracic/Head and Neck Medical Oncology, at the University of Texas MD Anderson Cancer Center, Houston, TX

During the chat, the experts will be discussing, among other topics, how lung cancer treatment has changed over the last few years, provide more information about the definition of “precision medicine” as it applies to lung cancer, discuss when patients might consider a clinical trial, as well as provide more background and specifics on the Lung-MAP and ALCHEMIST clinical trials.

For more background information on Lung-MAP, we also recommend Friends of Cancer Research’s “What Leaders in the Field are Saying About Lung-MAP.”

#LCSM Chat Topic 10/23: How can we help new stage IV #lungcancer patients consider 2nd opinions, mutation testing and clinical trials?

Most patients experience a period of stunned disbelief or shock when they hear a diagnosis of “metastatic lung cancer.”  For those who are offered treatment options, the first few months revolve around medical appointments.  Others may only be told to go home and get their affairs in order.  Patients and family members may be in denial, or trying to process what all those dismal survival statistics mean for their future. It might be the first time the patient or a family member has had to confront the possibility of death for themselves or a loved one.

Some patients (or their caregivers) may be empowered, engaged and researching options, but many don’t have the physical or emotional energy to do so.  At this point, few patients are thinking about second opinions, mutation testing, or clinical trials.

The problem with waiting for metastatic lung cancer patients to become empowered and engaged is that the majority won’t live a year if they can’t access the newest treatment options. However, if they get educated about their options, consult with a knowledgeable oncologist, and are eligible for newer treatments or clinical trials, their lifespan may be years longer.

You might ask, how could this be true?

The landscape of personalized medicine and new lung cancer treatments is changing fast, and more stage IV lung cancer patients are living longer.  Unfortunately, due to the pace of that change, not all healthcare providers who treat lung cancer are current on the newest treatment options. Some oncologists do not test their patients’ adenocarcinoma lung cancer tumors for EGFR or ALK, even though NCCN and other respected guidelines recommend it.  Even research oncologists at NCCN facilities can’t track every new clinical trial for lung cancer.  And, sadly, some healthcare providers simply believe that because metastatic lung cancer is not curable, there’s no point in treating it.

The fact is, most metastatic lung cancer patients (or their trusted caregivers) will need to become engaged and empowered if the patients want a better chance at survival.  Many will need help to do this, either online or offline.

The #LCSM Chat on October 23 will explore how the lung cancer community might help metastatic lung cancer patients become interested in and knowledgeable about second opinions, mutation testing, and clinical trials. Your moderator Janet Freeman-Daily (@JFreemanDaily), a stage IV lung cancer patient who currently has No Evidence of Disease in a clinical trial, will offer the following topics for discussion:

T1:  How can we help a stage IV lung cancer patient understand the need for 2nd opinion when their doctor offers no treatment?

T2:  How can we help a stage IV adeno lung cancer patient consider EGFR & ALK mutation testing if their doctor has not done it?

T3:  How can we help a stage IV lung cancer patient consider targeted therapy clinical trials if they have a targetable mutation?

We look forward to seeing you in the chat! To participate in the chat, remember to include #LCSM in all your tweets, or use a tweetchat tool like tchat.io with that hashtag (more on that here).

#LCSM Chat Topic 10/9: Helping media to cover #LCAM14

It’s Pinktober, that time of year when lung cancer advocates feel a pang of envy for the extensive media coverage given to other cancers. November is Lung Cancer Awareness Month (#LCAM14 on Twitter), and if things remain as they have in past years, few stories about lung cancer will appear in the media.

But we—the Lung Cancer Social Media community–have a chance to change that if we act NOW.

Let’s think about what barriers might keep journalists and reporters from producing lung cancer stories in the media during November:

  1. The idea didn’t occur to them.
  2. They’re not aware of the facts (such as lung cancer is the most deadly cancer worldwide, as well as #2 killer of all types in the US).
  3. Stigma makes them reluctant to support lung cancer awareness.
  4. They don’t know any visible, interesting survivors, family members, or care providers to use as source for the story.
  5. They need a fresh angle to avoid producing a story too similar to what they or someone else has already done.
  6. They’re short on time.

In years past, lung cancer advocates have made lists of media contacts and sent emails, tweets, and Facebook posts asking them to cover lung cancer during November. However, this approach doesn’t address most of the barriers listed above.  We can do better.

Let’s take a different tack. Let’s HELP the journalists and reporters overcome these barriers. We can make media coverage more likely by either writing an article ourselves to save them time, or suggesting facts, interview sources, and story angles they can use.  We can address the specific barriers by:

  1. Suggesting a lung cancer story to a local or national media outlet via email, Facebook, or Twitter.
  2. Providing key facts AND a link to sources for more facts.
  3. Showing why stigma is based on unfair assumptions.
  4. Suggesting well-spoken local survivors, family members, or care providers they can interview.
  5. Suggesting a “hook” — an angle for the story that ties into their market (e.g, local hospital for a regional paper, or a national movement like the CMS screening decision for a national newscast).
  6. Provide other content suggestions that reduce needed writing and production time.

The #LCSM Chat on 10/9 will brainstorm how to help journalists and reporters overcome the barriers to covering lung cancer in November. Your moderator, Janet Freeman-Daily, will offer the following topics for discussion:

  1. How might you identify well-spoken lung cancer survivors/family/providers with a good story for an interviewer?
  2. What local or national media outlet could you contact: paper, magazine, radio, TV, Internet?
  3. What new story angle might you suggest for your target outlet—person, activity, cancer clinic program, clinical trial …?
  4. What links and sources can you provide for reliable lung cancer facts and info about stigma?

We look forward to seeing you in the chat! To participate in the chat, remember to include #LCSM in all your tweets, or use a tweetchat tool like tchat.io with that hashtag (more on that here).