#LCSM

Details of 10/24 #LCSM Chat

As we said in the last blog post, the theme of the 8 PM Eastern (5 PM Pacific) 10/24 #LCSM Chat on Twitter will be Social Media & Lung Cancer Advocacy: What Can I Do?”

If you’re not sure how to participate in a tweetchat, visit our #LCSM Chat tab or click here.

The co-moderators @louisianagirl91 (Laronica Conway, a lung cancer advocate) and @JFreemanDaily (Janet Freeman-Daily, a lung cancer patient) will follow this format:

Introductions
Please introduce yourself with a tweet. If you plan to follow without participating, post a tweet saying “#lcsm” only. The moderators will briefly introduce the theme and greet participants.

Discussion
The moderators will post questions at about 15 minutes intervals.  The questions will be labeled Q1, Q2, and Q3.  It helps everyone to follow the discussion if you reply using the question number.

Q1: What are the most important messages we need to communicate to the public about lung cancer?

Q2: How can we use Facebook, Twitter & other social media to raise lung cancer awareness?

Q3: What can we do to stir media & business interest in Lung Cancer Awareness Month?

Parting Thoughts and Wrap Up

The chat transcript will be posted on Twitter and #LCSM Chat site about 5 minutes after the chat concludes.  We look forward to seeing you on Twitter!

#LCSM Chat Oct 24, 2013: “Social Media & Lung Cancer Advocacy: What Can I Do?”

Recent Lung Cancer Social Media (#LCSM) chats have focused on medical topics.  Collaboration to get better treatments to patients sooner is an important part of #LCSM, but it’s not all we’re about.

#LCSM is also about helping patients and families on a lung cancer journey, ending the stigma, and advocating to increase support for lung cancer patients and research.

Accordingly, the next chat will focus on lung cancer patients, families, and advocates rather than medical topics.  The topic will be Social Media & Lung Cancer Advocacy: What Can I Do?”  moderated by Laronica Conway, an LC advocate, and Janet Freeman-Daily, an LC patient (Squanch from Inspire.com).   The chat will be held Thursday, October 24, at 8 PM Eastern (5 PM Pacific).

Please send ideas for future #LCSM chat topics to lcsmchat@gmail.com.

Looking forward to seeing you on Twitter!

How Much Evidence Do We Really Need to Change Treatment Recommendations? – October 10

By Dr. H. Jack West

One ongoing controversy in the world of managing cancer, especially one in which cures are elusive, is how high the bar should be to guide treatment recommendations. The “gold standard” to change treatment is a significant improvement in the primary endpoint, ideally overall survival, in a prospective, randomized phase III trial with several hundred or even several thousand people. In some settings, treatment recommendations may not even change until a few randomized phase III trials show the same significant improvement with a new treatment approach.

But the reality is that sometimes we want or need to apply promising ideas that don’t have an overwhelming amount of evidence yet. That may be because a very promising result in phase II will typically take 3-5 years before the results of a subsequent larger phase III trial is completed and reported, with another 6-12 months before that new agent or combination is FDA approved and commercially available. That may also be because some of these clinical questions are too rare to test in a large phase III trial setting. For people with a ROS-1 rearrangement, who represent 1% of NSCLC, or those with leptomeningeal carcinomatosis, we can’t realistically expect to complete a randomized phase III trial with hundreds of patients assigned to one treatment or another.

  • So the first question is whether the medical community should be guided by a specific level of evidence to shape cancer treatment, and can the standard be lowered for clinical subgroups or settings in which the numbers are too small to ever run a large trial? And should the standard be higher in a curable setting like early lung cancer (is stereotactic body radiation therapy an appropriate alternative to surgery?) vs. metastatic disease because there is “more to lose”?
  • Second, should patients be able to dictate a lower level of evidence being required if they provide “informed consent” that one approach is conceptually attractive but not well tested?

And related to both of these points, is there a lower standard required when the cost of the treatment is low and/or the patient is paying and not insurance/broader society? If proton beam radiation therapy is three times as expensive as conventional radiation and has no actual evidence it’s superior, is it appropriate for institutions to market it (at a handsome profit) and/or
patients to expect it? Is it more appropriate if patients pay for some or all of the cost difference vs. passing on the costs to the others?

These are timely, important questions, so please join us on Thursday, October 10th, at 8 PM Eastern, 5 PM Pacific. Just get on twitter, filter your messages and add the hashtag #lcsm to your tweets, and join the conversation!

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