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.

#LCSM Chat topic 5/21: Living with and Beyond Lung Cancer

You mean I have to say something

Lung cancer patient advocates are beginning to make their voices heard and gain acceptance in the medical world.  For the first time ever, patient advocates will be speaking from the stage at the World Conference on Lung Cancer (WCLC), the largest meeting dedicated to lung cancer anywhere.  The meeting, which runs September 6-9 in Denver and is sponsored by the International Association for the Study of Lung Cancer (IASLC), will have sessions on research, treatment, biotech developments…and patient advocacy topics.

In the session titled “Advocacy in Practice,” #LCSM Comoderator Janet Freeman-Daily will be speaking about “Supporting Lung Cancer Survivors–Living with and Beyond Lung Cancer,” which will inform lung cancer healthcare providers across many specialties about the experiences of lung cancer patients and their preferred methods of seeking and receiving support during and after treatment.  Another lung cancer patient advocate, Craig Uthe (familiar in several online support forums as “CraiginPA”), will be speaking about “Patient Advocate Groups Driving Progress–Using the Evidence,” which will focus on ways patients, caregivers and advocates find and share scientific information that guides their choices of providers, treatments, and clinical trials.

Our next #LCSM Chat, on May 21 at 8 PM EDT, will crowdsource information for Janet and Craig’s talks while demonstrating the power of social media.   Input from all members of the #LCSM community are welcome—patients, caregivers, advocates, healthcare providers, researchers, healthcare facilities, payers, and agencies.  Moderator @JFreemanDaily will lead a discussion using the following topic questions:

  • T1:  What aspects of the #lungcancer patient/caregiver experience should be shared with WCLC attendees?
  • T2:  What #lungcancer research, treatment options, and conference info do you like to find on #LCSM and other social media?
  • T3:  How has knowledge from social media and support forums changed YOUR #lungcancer healthcare or treatment experience?
  • T4:  What kind of supports have been most effective in helping #lungcancer patients live well with lung cancer?

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.


#LCSM Chat Topic 5/7 8PM ET: Spreading Hope for #LungCancer


Hope Summit bloggers with Katie

Some of the lung cancer survivors, caregivers and advocates at LUNGevity HOPE Summit

Lung cancer patients, caregivers, advocates and healthcare providers may sometimes feel overwhelmed by diagnosis, treatment (or lack thereof), and published statistics for lung cancer, the top cancer killer.

In reality, we have more reasons to have HOPE now than ever before.  More effective treatment options have been approved for lung cancer during the past five years than in the past four decades. Molecular and genomic testing identifies patients who can take targeted therapies.  Early detection with low dose CT screening is now covered by insurance.  Research into new biomarkers, immunotherapies, and liquid biopsies is underway.

How can we help spread this hope to lung cancer patients, survivors, caregivers, advocates, and healthcare providers?
In honor of Lung Cancer Hope Month (May), #LCSM Chat will discuss “Spreading Hope for Lung Cancer” on Thursday, May 7, at 8 PM. Moderators Janet Freeman-Daily (@JFreemanDaily) and Deana Hendrickson (@LungCancerFaces) will post the following topic questions:

T1: How can healthcare providers help spread hope for lung cancer?

T2: How can advocates and advocacy groups help spread hope for lung cancer?

T3: How can patients and caregivers help spread hope for lung cancer?

T4: How can we encourage HCPs, advocates, patients and caregivers to spread hope more often?

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.

#LCSM Chat 4/23 8PM ET: Discussing the Role of the Cost of Cancer Therapies. Does Cost Limit Care?

Written by #LCSM Moderator Dr. H. Jack West

Earlier this week, I met a young women newly confronted with the terribly difficult news of a diagnosis of advanced lung cancer. As we discussed the potential of finding a targeted mutation that could be treated by an oral targeted therapy, I mentioned that it typically takes several days to a couple of weeks to get approval and delivery of one of these agents, since they cost anywhere from $7,000 to $15,000 per month in the US.  Though I reassured her that this treatment should be covered by her insurer if she has a driver mutation and that there are other mechanisms of assistance, I could see that she was nearly as worried about the potential challenges of the cost of this therapy for her and her family as she was in our discussions around the staging and diagnosis of her cancer.

Then yesterday, I was at a small meeting discussing novel immunotherapies for lung cancer, when the topic shifted from the current focus on individual agents, as currently approved or expected soon, and the future of immunotherapy. Several people agreed that the future is of combining immunotherapies.  Along with the potential promise of this strategy, I thought of the sobering prospect that a treatment that costs about $150,000/year could be replaced by a combination that costs twice that much. One member of the group noted that a pharmacist at his institution had calculated that the cost of the complete course of investigational therapy in a clinical trial they were developing would cost about $800,000.

Cancer is already about as distressing a situation as anyone could face. This week we’ll discuss the role of cost of therapies on a cancer patient, covering four key questions:

T1) Has the cost of cancer treatment directly limited your care or that of a patient, if you help care for patients?

T2) Has concern about the impact of cost on you or your family led to significant worry as a symptom to manage, on top of cancer?

T3) Given development costs & benefits these treatments can deliver to patients, are pharma companies justified in charging so much?

T4) Do you feel more attention to cost is justified to lead to change, or do you feel frustrated/angry to be a “hostage” in need?

Join us Thursday, April 23, 5 pm PT/8 pm ET as we discuss these questions and more.  Don’t forget to add the #LCSM hashtag to participate. This conversation is open to all! For more information on how to participate, read our #LCSM Chat Primer!

#LCSM Chat Topic 4/9 5pm PT: Shared decision making (#sdm) for #lungcancer screening with #LDCT: What is the best approach?

On February 5, 2015, the Centers for Medicare & Medicaid Services (CMS) issued a final national coverage determination that provides Medicare coverage of screening for lung cancer with low dose computed tomography (LDCT) for high risk patients. CMS will cover lung cancer screening with LDCT once per year for Medicare and Medicaid beneficiaries who meet certain criteria.

In order for CMS to pay for LDCT lung cancer screening, the patient and their health care provider (HCP) must engage in “shared decision making” before the screening–CMS requires them to discuss risks and benefits of screening, including follow-up testing that might occur if nodules are discovered, radiation exposure from the scan, and the possibility of false positives (nodules identified as lung cancer when the patient doesn’t actually have lung cancer).

As CMS states in its decision memo:

“Shared decision making is important for persons within the population for whom screening is recommended.  The benefit of screening varies with risk because persons who are at higher risk because of smoking history or other risk factors are more likely to benefit.  Screening cannot prevent most lung cancer deaths, and smoking cessation remains essential.  Lung cancer screening has substantial harms, most notably the risk for false-positive results and incidental findings that lead to a cascade of testing and treatment that may result in more harm, including the anxiety of living with a lesion that may be cancer.  Over-diagnosis of lung cancer and the risks of radiation are real harms, although their magnitude is uncertain.  The decision to begin screening should be the result of a thorough discussion of the possible benefits, limitations, and known and uncertain harms.”

But what is shared decision making?  How is it different from the usual patient-HCP encounter?

In the traditional method of medical decision making, the doctors might meet in a closed room, come to a consensus, then tell the patient what they will do.  With shared decision making, the healthcare provider and patient meet, go over a detailed account of risks and benefits, and make a decision together with consideration of the patient’s perspective and preferences.

Dr. Victor Montori (@vmontori), Professor of Medicine at the Mayo Clinic and expert on shared decision making, states: “Shared decision making makes the options available clear, empowers the patient to consider their options and express their goals.”  Dr. Montori’s video on youtube provides a nice description of shared decision making and its importance.

During #LCSM Chat on April 9, 2015, we will discuss what CMS-required shared decision making (#sdm) may look like prior to lung cancer screening with LDCT.  Our moderator, Dr. David Tom Cooke (@UCD_ChestHealth) will address the following topics.

T1: What does shared decision making (#sdm) for #lungcancer screening mean in the patient perspective? HCP perspective?  #LCSM

T2: What #LDCT concepts are most important during #sdm? False Positive? False Negative? Rate of true #lungcancer? Radiation exposure? #LCSM

T3: What shared decision making (#sdm) tools are available for discussing #LDCT?  What are their strengths and weaknesses? #LCSM

T4: Which graphics best illustrate risks & benefits of #LDCT & the likelihood of actually finding #lungcancer?  #LCSM #sdm

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.  Note that #sdm is a healthcare hashtag registered on to denote shared decision making. It is not necessary to include #sdm in your tweets to participate in this chat, but including it will make this discussion more visible to the large Twitter community interested in shared decision making.  #LDCT is the hashtag registered on to denote lung cancer screening with LDCT.

We look forward to an enriching and educational conversation with the #LCSM Community!



NLST Patient & HCP Shared Decision Tool

Shared Decision Making: An Interview with Mayo Clinic Professor of Medicine Victor Montori

Symplur analytics for #sdm (shared decision making)

Centers for Medicare and Medicaid Services:  Decision Memo for Screening for Lung Cancer with Low Dose Computed Tomography (LDCT) (CAG-00439N)

JAMA: Competing Mortality in Cancer Screening–A Teachable Moment

Visualizing Health: A Scientifically Vetted Style Guide for Communicating Health Data

Shared Decision Making Aid for Lung Cancer Screening Discussion