#LCSM Chat 8/27 8pm ET: Let’s get social… in our health?

by guest host Christina Lizaso

The internet has obviously changed a lot of things. One of the most exciting and impactful changes for me has been how it enables patients to find each other and form disease communities. It began with discussion boards; now there are an amazing number of options to suit various interests, styles and comfort levels. The rise of online patient communities has been especially important for those with rare disease and diseases which carry stigma.

What is really exciting is to see patient communities go beyond internally supporting one another and reach out to make a bigger impact — with their data, in cross-disease advocacy and information sharing, and in working directly with doctors, healthcare workers, researchers, pharma and health IT professionals.

I’m definitely an admirer of the #LCSM community, which was formed and launched just prior to Dee Sparacio (@womenofteal) and I forming the #gyncsm community for gynecologic cancers. The #LCSM community has a great focus on turning ideas into action, pushing for collaboration, and is not afraid to get technical.

Guiding our discussion for the Thursday, August 27th #LCSM Chat at 8 PM (Eastern Time) will be:

T1: What are the benefits to patients and loved ones in connecting and sharing on social media? Why do you participate?

T2: What are your tips for getting started in using healthcare social media to connect and learn about a condition?

T3: What are some considerations and cautions when it comes to getting social with your health?

T4: How do we bring more people into the important discussions happening in digital health communities like #LCSM?

The #LCSM community is vibrant and welcoming. It is the perfect setting to check out getting social with your health – no matter your health background. I hope you’ll join us for a great discussion. Dee and I are honored and excited to participate.

For a primer on how to join #LCSM chat, check out How to Participate in LCSM Chat. You can also check out the #gyncsm community disclosure statement on participating in healthcare social media.

Christina Lizaso (@btrfly12)
Co-Founder and Co-Moderator #gyncsm community
Moderator #patientchat

Further Reading:

#LCSM chat 8/13 8pm ET: How can we fight the rising cost of cancer care?


A July 23 article in Newsweek titled “The High Cost of Cancer Care: Your Money or Your Life?”  emphasizes a topic of increasing concern:  the escalating costs of new cancer drugs, and the toll this takes on patients and families.

A presentation at ASCO 2015 titled “Perspectives in Value” graphically showed the escalating price of cancer drugs in recent years, and how those prices soar off the charts for some new immunotherapies.


The presentation also showed how prices of targeted therapy drugs don’t seem to go down as more patients use them.  In fact, the price of Gleevec continued to rise even when a competing drug entered the market.


Cancer drugs are supposedly developed and marketed in a free-market economy, which assumes willing sellers negotiate with willing buyers to set a fair price.  Healthcare systems in other countries do negotiate drug prices, and are able to offer drugs at lower prices than we see in the USA.  However, USA insurance companies are captive buyers, and USA cancer patients are held hostage. Drug companies can charge whatever they want in the USA because no one is allowed to negotiate with them.

A group of doctors is encouraging patients and their families to support an online petition titled “Protest High Cancer Drug Prices so all Patients with Cancer have Access to Affordable Drugs to Save their Lives.”  On August 13, 2015, at 8pm Eastern Time, moderator Janet Freeman-Daily (@JFreemanDaily) will lead #LCSM Chat as we discuss some issues raised by this petition:

T1: What are pros and cons of allowing Medicare to negotiate drug prices? Will this lower the cost of cancer care?

T2:  Should doctors prescribe an expensive cancer drug when the patient’s health plan will not cover the cost of the drug?

T3:  Should health plans cover expensive drugs that add only 1-2 months of life if it means higher premiums for everyone?

T4:   Besides signing the petition at https://www.change.org/p/secretary-of-health-and-human-services-protest-high-cancer-drug-prices-so-all-patients-with-cancer-have-access-to-affordable-drugs-to-save-their-lives?recruiter=239495071&utm_source=share_petition&utm_medium=email&utm_campaign=share_email_responsive, what actions can we take to reduce the cost of cancer care?

We hope you’ll join us on Thursday.  For a primer on how to join #LCSM chat, check out How to Participate in LCSM Chat.

#LCSM Chat 7/30 8pm ET: What’s the Role Today of Whole Brain Radiation for #LungCancer with Brain Metastases?

brain mets (for Jul-30 blog)

by H. Jack West, MD

Brain metastases are relatively common in lung cancer, seen in about 15% of cases, and the management of them is evolving as technology and our preferences change. For decades, whole brain radiation therapy (WBRT) was the only game in town and did a reasonable job controlling a problem that we couldn’t manage readily any other way – chemotherapy generally doesn’t penetrate well into the brain, and brain surgery is only a feasible option for one or a few brain metastases, not many.

But over the past 10-15 years, stereotactic radiosurgery (SRS), which is more broadly known by the marketed names Gamma Knife or Cyber Knife, became more readily available and better studied. It has become a standard of care for patients with 1-3 brain metastases, and increasingly offered and used for far more brain metastases, as WBRT became more feared for its potential to cause short- and long-term cognitive problems. While long-term cognitive function was not a significant concern many years ago, when survival was far more limited, it has become a more relevant and dreaded concern as more patients with lung cancer are living well beyond prior benchmarks.

This year, at the American Society for Clinical Oncology Annual Meeting (ASCO 2015), two highly publicized presentations centered on the potential value of WBRT. The first was a UK-based study called QUARTZ that tested WBRT with steroids vs. steroids alone (and general supportive care on both arms) in 538 patients with lung cancer and brain metastases. The trial demonstrated no benefit with WBRT, though survival was very poor on both arms. This, along with the very long duration of the trial enrollment over 7 years, suggested that there was a filtering of patients directed to the trial, so that a lot of the patients enrolled had an unusually poor prognosis and that the trial was not pursued by patients with a better prognosis. Many who reviewed the results felt that the trial illustrated only that WBRT didn’t benefit the patients who we should expect would have a very limited survival of just a few months, but that the QUARTZ trial can’t really speak to the value, or lack thereof, of WBRT in more fit patients.

The second trial, known as NCCTG N0574, was actually presented in the ASCO 2015 Plenary Session and addressed the question of whether WBRT provided additional benefit that more than counterbalanced the risks of it in 213 patients, 72% with lung cancer, who also received SRS for 1-3 brain metastases. On this trial, there was also no significant difference in survival between the treatment arms, while cognitive function was worse in patients with WBRT (92% vs. 64% with cognitive decline 3 months later, for SRS alone or with WBRT, respectively). On the other hand, progression with new or enlarging brain metastases was significantly more common with SRS alone at 3 months (25% vs. 6%) and 6 months (35% vs. 12%).

Finally, beyond brain radiation for established brain metastases, there’s the question of whether these concerns about WBRT will lead to significant hesitation in use of prophylactic cranial irradiation (PCI), which uses a lower dose of brain radiation than WBRT, for settings in which it is often recommended. For instance, in limited stage small cell lung cancer (SCLC), PCI has an established survival benefit and is routinely recommended. It is controversial and sometimes also used for extensive stage SCLC and even for stage III non-small cell lung cancer (NSCLC). In these settings, it overwhelmingly decreases the risk of relapses in the brain and shows at least trends toward improved overall survival in some trials. So will the findings that challenge the use of WBRT lead to reluctance of doctors to recommend and patients to accept PCI?

This leads to several questions we’ll discuss at our upcoming #LCSM tweet chat on 7/30 at 8 PM Eastern, 5 PM Pacific.  Moderator Dr. Jack West will raise four topic questions:

  • T1) Would you avoid WBRT if you had many brain mets? Does fear of cognitive loss always trump risk of progression in brain?
  • T2) Would you favor Gamma Knife (SRS) over WBRT for >20 brain mets, even though benefits & risks are unknown?
  • T3) If you had many brain mets and WBRT was recommended, would you choose no radiation instead of WBRT? Would you pursue chemo?
  • T4) Prophylactic brain RT (PCI) is often prescribed in SCLC because brain is likely site of 1st progression. Would you now avoid PCI?

For a primer on participating in #LCSM Chat, visit our “Participate in #LCSM Chat” page.  Hope we’ll see you Thursday!

#LCSM Chat topic 7/16 at 8pm ET: Happy Second Birthday to Us!

By Andrea Borondy-Kitts; Laronica Conway; David T Cooke, MD; Janet Freeman-Daily; Deana Hendrickson; Matt Katz, MD; and H Jack West, MD.

Happy 2nd Birthday LCSM

The #LCSM Chat on Thursday, July 16, at 8 pm Eastern Time (5 pm Pacific) will be an early celebration of our second birthday.  The #LCSM hashtag was first used by @subatomicdoc (Matt Katz, MD) to represent Lung Cancer Social Media on June 22, 2013, and the first-ever #LCSM Chat occurred on July 25, 2013.  Seventy-two patients, advocates, caregivers, family members, educators, healthcare providers, and researchers participated.

The first #LCSM Chat topic question was “It’s our community. What do you hope to get out of #lcsm chat?”  The answers were diverse and wide-ranging, reflecting the interests of a broad-based lung cancer community: education and information (about diagnosis, treatments, survivorship, and side effects), understand needs of patients and families, inspiration, involvement, support, community, resources, learning about latest research, facilitate social media (#SoMe) provider-patient partnerships, encourage others to reach out, facts about lung cancer, reduce stigma, expert recommendations, promote sharing of ideas, empowerment.

It was a revelation—no other forum allowed all stakeholders in the lung cancer community to communicate directly with each other.

Two years later, many of these goals are being realized.  Our chat topics and participants continue to evolve as more stakeholders become aware of the power of social media.

Members of the #LCSM Chat Founders and several long-term members took the time to reflect on this milestone and share their thoughts:

Lung Cancer Caregiver Deana Hendrickson (#LCSM Chat co-founder):

When I started tweeting in 2012, there wasn’t much about lung cancer on Twitter. It was pretty lonely out there for this frightened daughter. Today, #LCSM is a welcoming virtual meeting place for every facet of the lung cancer community. #LCSM provides the support, fellowship, science, collaboration and sense of unified community that simply did not exist two years ago. So far, so good. Now, let’s work even harder to make it better!

Lung Cancer Caregiver Andrea Borondy Kitts:

I joined Twitter because I wanted to go to a tweet chat on lung cancer. How did I find out about the tweet chat? From Squanch (Janet Freeman-Daily) on the Inspire website. Until that day in July 2013 I had never done anything with social media — not Facebook, not LinkedIn and definitely not Twitter. I thought Twitter was for teenagers. My first tweet chat “hooked” me. I have become a fierce advocate of social media for health advocacy, disease management, patient empowerment and activation, and most of all, for teaming of all healthcare (in this case, lung cancer) stakeholders. Working together, patients, caregivers, oncologists, surgeons, radiologists, advocacy organizations, medical associations, and “industry,” we have made a difference.

#LCSM is my community; for advocacy, for staying current on the latest research and information on lung cancer, for help with projects and for emotional support during rough moments. Although I have never met most of my #lcsm friends, I do consider them friends. I have never been disappointed when I have asked for help or reached out to one of the members.

Key #LCSM accomplishments include the petition asking CMS to cover lung cancer screening signed by over 8000 people, the tweet chats to gather information for PCORI grants, the November lung cancer awareness month lung cancer fact of the day tweets, the expertly moderated bi-weekly tweet chats on critical topics with well researched background summaries and links to additional information to name a few.

In 2 years #LCSM has gone from fledgling community to a role model for others to follow.

Thoracic oncologist H. Jack West, MD (#LCSM Chat co-founder):

Like most 2 year-olds, #LCSM is on the move, but it’s still taking toddling steps. We should be rightfully proud to have built a new community that engages patients, caregivers, health care professionals, and even industry-affiliated people who consider themselves part of a global lung cancer community. We have successfully launched and created #LCSM as the “go to” way to reach the most broadly inclusive group touched by lung cancer, and we have fostered something that truly feels like a nascent community.

But a two year-old is still very immature, and that birthday or anniversary is more notable for the potential in the future. For #LCSM, most of us could do better, starting with me, in ensuring that we share what would be interesting to others by adding those few characters that make it possible to reach the broader community. We should be better about RT-ing, sharing the ideas of others and commenting on the exciting developments in lung cancer that are being introduced by others. And we should make each #LCSM chat a celebration of the community that feels like a shared experience with common goals.

Lung cancer is a huge problem affecting literally millions around the world.  The magnitude of the problem also comes with a comparable magnitude of opportunity to make an impact. As we wish #LCSM a happy 2nd birthday, we should be proud of what we’ve started but focus on what we still need to do in order to realize the potential for a community where voices from all corners of the lung cancer world speak together.

Thoracic surgeon David Cooke, MD (#LCSM Chat co-founder):

I’ve been extremely proud to see news reports and stories from patients and their families, who discovered #LCSM and found it helpful for them as they move forward through a difficult process. My happiness for the growth of #LCSM is similar to the joy I felt when I removed the stage I lung cancer from our first patient with lung cancer discovered by our lung cancer screening program.

Radiation Oncologist Matt Katz (first to use the #LCSM hashtag):

#LCSM epitomizes collaborative advocacy for people that truly need it. The community has successfully brought many people together with the common purpose of improving lung cancer care.  The ability to heal and help through connection is remarkable; whether it’s support during treatment or grieving #lcsm has done so much. And there is more we can do.

Lung Cancer Caregiver Laronica Conway (#LCSM Chat co-founder):

Simply put, LCSM is like family. When Deana asked if I would be interested in participating, I had no idea what that meant. All I knew was that it would allow me an opportunity to communicate with others who knew and understood my pain, my emotions and my fears. After mom died in 2012, I needed the LCSM community (the sisters and brothers I’ve never met.) I’ve received education, support and guidance…just like a family. It feels good to have each other’s backs. And I am proud to have been a part of the first two years of LCSM. Happy Anniversary to my LCSM family! 

In celebration of our second birthday, Moderator @JFreemanDaily will lead the #LCSM Chat in discussing the following topic questions:

  • T1: What changes/progress have occurred in #lungcancer awareness, treatment and advocacy since #lcsm began 2 years ago?
  • T2: What do you see as significant accomplishments of #LCSM in the past 2 years?  How has #LCSM influenced the #lungcancer community?
  • T3: What aspects of #LCSM have been the most meaningful to you in the past 2 years?
  • T4: What would you like to see happen within #LCSM in the next year?

Please remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here.  Hope you’ll join us to celebrate this milestone in Lung Cancer Social Media!

And stay tuned to our #LCSM Chat website–supported in part by the Patient Centered Outcomes Research Institute (PCORI), big things are coming on lcsmchat.com!

NIH invite to #LCSM: join NIH tweetchat on Precision Medicine Initiative 6/30 1pm ET using #PMINetwork hashtag

Tomorrow, June 30, at 1:00 pm ET, the National Institutes of Health (NIH) will host an hour-long Precision Medicine Initiative chat on Twitter using the hashtag #PMINetwork.  Participants will include NIH Institutes like the National Cancer Institute (see the NCI’s social media events page), advocacy groups like LUNGevity (@Lungevity), and anyone interested in learning more about the Precision Medicine Initiative.

During the chat, the NCI invites members of the #LCSM community to ask questions about lung-specific NCI precision medicine initiatives such as Lung-MAP, ALCHEMIST, and NCI-MATCH.  When you tweet your Precision Medicine questions, be sure to tag @theNCI, and they will be happy to try and answer it.

Here are the specific topics the NIH will tweet during the chat:

T1: Let’s get started. Does anyone have experiences with #PrecisionMedicine, either as a patient or provider?

T2: Overall, tell us what you find most exciting about #PrecisionMedicine Initiative.

T3: We’ve heard about areas needing special attention & want to address these issues in the overall Initiative design. Tell us more

T4: Tell us about areas/populations/disease groups that we need to focus on when building the cohort.

T5: Tell us what a participant-driven cohort means to you

T6: America’s rich diversity need to be incorporated. How do you reach all sections of society?

T7: Health care providers: Tell us what you hear most from your patients about #PrecisionMedicine and standard of care.

T8: Let us know if you would consider joining a 1 million person volunteer cohort and why or why not.

T9: Share your Precision Medicine resources.


#LCSM Chat Topic 6/18: “What I wish I’d known before my #LungCancer treatment.”

Our topic for the next #LCSM Tweet Chat on Thursday, June 18, at 5 PM Pacific (8 PM Eastern) is “What I wish I’d known before my #LungCancer treatment.” Our moderator will be Dr. David Tom Cooke (@UCD_ChestHealth).

Although medicine has made some great advances in the treatment of lung cancer, sometimes pre-treatment expectations do not always match a patient’s post treatment reality.

Understanding what patients and their families would have liked to have known about their therapies may help clinicians and care providers better plan to improve outcomes. This conversation within the #LCSM community may help lead to patient-centered informed consent for lung cancer treatment that combines transparency in clinical outcomes as well as improved patients’ expectations of their own treatment.

With the above goals in mind, here are the questions we will discuss during our June 18th Tweet Chat:

T1: As a patient/caregiver, what do you wish you had known prior to treatment?

T2: As a healthcare provider, what do you wish your patients knew prior to treatment?

T3: What is the best way to get accurate information to patients prior to treatment?

T4: What barriers exist to getting this information to patients in a timely manner?

Please join us on Thursday, June 18, to discuss this important topic. Remember to add the hashtag #LCSM to your tweets at the appointed hour and follow the tweet stream. If you’re not familiar with tweet chats, here is information on how to participate in #LCSM Chat.

If you cannot participate in the tweet chat but still want to share your opinion, please post your thoughts in the comments below.  We’ll make sure your comment is tweeted during the chat.

#LCSM Chat Topic 6/4 8pm ET:  Moving Ahead with Immunotherapy for Lung Cancer–Biomarkers, Timing, Duration, and Combinations

by H. Jack West, MD

The hot subject at ASCO this year was immunotherapy for many cancers, and developments in lung cancer led the charge. The specific findings of greatest interest were that the PD-1 inhibitor Opdivo (nivolumab) was found to have a far superior survival, higher response rate, and overall better side effect profile than Taxotere (docetaxel) as second line treatment after initial chemotherapy. The US FDA approved Opdivo for squamous NSCLC, and we anticipate an approval for non-squamous NSCLC soon. 

But there are still several open questions as we integrate immunotherapy into routine treatment of lung cancer. These questions are what we’ll focus on in our Thursday June 4th #LCSM chat at 8 PM ET (5 PM PT).

The first question is about using biomarkers to predict which patients are more or less likely to benefit. These drugs are extremely expensive, at about $13,000 per month, which is arguably reasonable if patients are benefiting greatly, but not for patients who are destined to show early progression. The trial of nivolumab in squamous NSCLC showed no clear association with the biomarker PD-L1, a protein that interacts with PD-1. Several studies have shown that these immunotherapies are most consistently effective in patients who have tumors and/or immune cells that have a lot of the PD-L1 protein on them. But not all. The trial of Opdivo in squamous NSCLC showed no association of outcomes with PD-L1 staining, but the trial of Opdivo in non-squamous NSCLC showed the improvement in survival with Opdivo was limited to the approximately 55% of patients with PD-L1 expression. Whether the FDA or insurers will limit Opdivo in patients with non-squamous NSCLC is unclear. 

Another question is timing. While these trials were in second line, for patients who progressed on prior chemotherapy, there is great interest in moving immunotherapy up into first line therapy, along with or instead of chemotherapy. We don’t have enough evidence to say that immunotherapy is superior to first line chemotherapy, either in a broad population or in a selected one, but there are large numbers of trials that are testing PD-L1 expression in first line. Even in the absence of that evidence for another year or two, at least, we should expect that many patients and their oncologists are eager to try immunotherapy before chemotherapy if it is covered by their insurer. But without evidence, is that a wise thing to do?

Then there is duration of therapy. While most clinical trials give immunotherapy on an ongoing basis until a patient demonstrates significant progression or side effects, part of the appeal of treating with immunotherapy is that the immune system can potentially sustain the anti-cancer activity stimulated by the initial treatment. I have a patient responding beautifully to nivolumab, now for over two years, but she is tired of getting infusions every two weeks. Meanwhile, there are many patients who were responding to immunotherapy but discontinued it because of side effects, whether mandated to come off of a clinical trial or opting to stop immunotherapy due to their side effects. Many such patients have continued to do well and demonstrate no progression for months or longer. This begs the question of whether patients can pursue a limited course of immunotherapy and stop after several months or a year rather than be tethered to treatments every few weeks that may not be necessary. But we don’t really know.

Finally, there’s the option of pursuing two different immunotherapy agents, such as the combination of Opdivo and Yervoy (ipilumumab). This combination looks very promising in patients with metastatic melanoma, including in patients who don’t have PD-L1 expression. This raises the question of whether the combination may overcome what would have been a weak response in those without a favorable biomarker. However, the combination now makes treatment TWICE as expensive and considerably more toxic. Is immunotherapy as appealing if it now has more side effects than chemotherapy-based treatment, and is it even feasible to consider treatment regimens that now reach a cost over $250,000/year?

With this background in mind, we’ll ask the following questions:

  • T1: If biomarker predicts benefit but isn’t req’d, would you test to decide to do immunoRx, or just favor immunoRx w/o test?
  • T2: If immunoRx is proven 2nd line, after chemo, would you want to try it instead of 1st line chemo if you could get it covered today?
  • T3: If we don’t know whether longer duration is needed in responders, would you stop immunoRx after 6-12 mo & follow off Rx? Stop ever?
  • T4: Are immunoRx combinations attractive & feasible if side effects worse than chemo & costs are >$250K/yr? What if copay was 20%?

Please remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here.