#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 symplur.com 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 symplur.com 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

#LCSM Chat Topic 3/26: The Landscape of the #LungCancer World After Opdivo–Where We Are, Where We’re Going

Post by #LCSM Moderator Dr. H. Jack West:

Earlier this month, the FDA made quick work of the application that Bristol-Myers-Squibb had just completed for Opdivo (nivolumab) for patients with squamous cell NSCLC that has previously been treated with standard chemotherapy.  This was a very rapid decision, which highlighted the improvement in median overall survival from 6 to 9.2 months. So where are we now? What are the implications of the approval, both in terms of future approvals and the current treatment options for patients? Will Opdivo be the default best treatment in the second line setting, replacing chemo? Will cost be a barrier? What are people’s expectations now that we are entering into a new era of immunotherapy for lung cancer? For the upcoming #LCSM tweetchat on Thursday, March 26, at 8 PM Eastern/5 PM Pacific, let’s discuss the implications and expectations around Opdivo’s approval.  Specifically, we’ll cover the following questions:

  1. Given rapid FDA approval, should we be hopeful that FDA is now expediting approval of pivotal new therapies? Was this fast enough?
  2. What do we expect/understand about Opdivo? Likely helpful for most pts? Are side effects a concern? Do folks expect it to cure pts?
  3. Will people seek Opdivo in other settings, such as 1st line or non-squamous NSCLC? Should coverage be expected?
  4. What will role of immunotherapies be for #LungCancer in 5-10 yrs? Will it replace chemo? Be added to current standards? Cure pts?

There are no easy answers, but it’s exciting to have entered into a new era where the role of immunotherapy is likely to become better defined and will lead to marked improvements for at least some people with lung cancer. I hope you’ll join us on Thursday for the chat!  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.

Special #LCSM Chat 3/19 starting ~10 AM PDT: Patient’s Experience of Lung Cancer Surgery via Live Tweets

On March 19th, 2015, starting around 10AM PT, UC Davis will be using #LCSM and #UCDVATS hashtags to live tweet the experience of a patient undergoing minimally invasive surgery for lung cancerDavid Tom Cooke, MD, FACS, (@UCD_ChestHealth) , head of University of California at Davis Thoracic Surgery and #LCSM Co-Founder, explains why:

“Is there a cure for lung cancer?”

I hear this question often.  Many of you know that lung cancer has a five-year survival rate of around 15%.  One reason this rate is so low is because lung cancer patients are rarely diagnosed in early stages of the disease.  The majority of patients are diagnosed at an advanced stage (stage III or IV) when the disease has already spread outside the lung.  Currently, only 25% of lung cancer patients are diagnosed at stage I or II, although we expect more patients will have their disease caught early by lung cancer screening programs.

The standard of care treatment for the physically fit person with stage I and II lung cancer is surgery, or removal of part of the lung.  The five year survival for someone treated with surgery for Stage I lung cancer is around 80%.  That means 80% of those individuals are effectively cured of their lung cancer.

An 80% cure rate is great news, right?  So why do early stage lung cancer patients hesitate to have lung surgery?  Well, most people don’t know much about lung cancer or ways to treat it effectively.  Forums like #LCSM Chat are leading the charge to disseminate evidence-based information.  But the bottom line is:  people are afraid of surgery.   Patients view thoracic surgery (surgery on the contents of the chest, in this case the lungs) as high risk, with potentially serious complications.  Patients frequently ask me, “Are you going to crack my chest open?”   Their fear can be overwhelming.

The fact is, most early stage lung cancer patients can have surgery without cracking their chest open.  Minimally invasive lung surgery has evolved considerably.  For most stage I lung cancer patients, surgery can be performed with small incisions and a high definition camera, just like most gall bladder surgeries have been done over the past ten years.

This type of surgery for lung cancer is called video-assisted thorascopic surgery (or VATS) (scopic meaning camera, thora or thorax meaning chest).  VATS  results in smaller incisions, a shorter stay in the hospital, less need for pain medicine,  and faster return to work and activities of daily living.  Moreover, VATS has the same survival results as traditional open surgery, where we have to make a larger cut and spread the ribs.

To help people understand what patients experience when they undergo VATS for early stage lung cancer, UC Davis will be  performing a lung cancer surgery live on Twitter starting on March 19, 2015 at around 10 AM PDT (don’t worry, we won’t be tweeting while operating — our public relations people will do the tweeting).   Our patient has a keen interest in education and was excited to volunteer and share her story.  She will undergo a right VATS lower lobectomy (removal of the bottom third of the right lung) for early stage lung cancer.

The focus of this live tweeting will not be the surgery itself.  There are plenty of videos on YouTube that show how to do a VATS lobectomy.  Our tweets will focus on our patient and her experience with the preoperative check in process, operation, and postoperative recovery, as well as the clinical care processes that will support her recovery.  Tweets will also follow her tumor through pathology processing and its trip to the UC Davis biobank.  Our tweets will contain the hashtags #LCSM and #UCDVATS.

Our patient’s case highlights some very important facts:

  1. Surgery for lung cancer has evolved.  Now with minimally invasive approaches, small incisions, and state of the art treatment during and after surgery, we are able to “stack the deck” in our patient’s favor to ensure their successful results.
  2. You only need lungs to get lung cancer.  Our patient is a never smoker, and has no appreciable risk factors.
  3. Lung cancer is the number one cancer killer of women, yet only 1% of women when polled identify this fact (source: American Lung Association),
  4. Up to 80% of patients with stage I of lung cancer (early stage) are cured after treatment.

We hope you’ll follow the hashtags #LCSM or #UCDVATS starting around 10 AM PDT on March 19th to share our patient’s experience of lung cancer surgery at UC Davis.

#LCSM Chat Topic 3/12 8PM ET: Giving Back–Ways to Help Other Cancer Patients

image credit: Microsoft

image credit: Microsoft

Cancer patients  and their caregivers come to patient communities (whether online or in real life) for reasons such as seeking support, finding hope, and learning about their disease.  Eventually some become a source of support, hope and information through their activities.

These patients and caregivers sometimes express a desire to reach out to other patients and caregivers, to give back in appreciation for the help they received with their cancer experience.  This may take the form of blogging, participating in fundraisers, volunteering for advocacy projects, or other activities.

But sometimes those who would like to give back are uncertain where to start.
The #LCSM Chat on March 12, 2015, at 8 PM Eastern Time, will discuss motivations for giving back, ways in which patients and caregivers can help others dealing with cancer, and resources available to make this possible. The #LCSM Chat moderator Janet Freeman-Daily (@JFreemanDaily) will post the following topic questions:

T1: What motivated you to reach out and/or give back to cancer patients and/or caregivers?

T2: In what ways might cancer patients or caregivers help others who are dealing with their disease?  How might they reach out?

T3: What resources are available to help give back?  Pls share links if you have them (websites, Inspirational stories, etc.)

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.