GRACE :: News/Info

How to Find the Latest Info Directly from ASCO 2013

   We’re now in full-on pre-ASCO mode, with the conference just under two weeks away (May 31 to June 4th).  Between now and then, I’ll be working on some presentations I’ll be doing while there, as well as planning a round table with GRACE faculty members Nate Pennell (from Cleveland Clinic, Cleveland, OH) and Mary Pinder (from Moffitt Cancer Center in Tampa, FL).  On the morning of Tuesday, June 4th, I’ll be sitting down with them to discuss some of the most interesting and promising work in lung cancer that we’ll have just seen coming out of ASCO 2013.  This will be just preliminary impressions without all of the data or a lot of detail, but we’ll be putting out the video from this presentation as a series of podcasts as early as later that week (around June 7th) and continuing until it’s all available probably over a couple of weeks.  

   We’ll then plan to follow with a live webinar on ASCO highlights with a couple of experts presenting the key results in more detail, probably in the first half of July.  Details to come.

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Faculty Expert Videos from IASLC Targeted Therapies in Lung Cancer Conference

 

Here’s the growing list of videos done at the International Association for the Study of Lung Cancer (IASLC) 13th Annual Targeted Therapies in Lung Cancer meeting.

 

Dr. William Pao (Vanderbilt) on the My Cancer Genome Project

Dr. Geoffrey Oxnard (Dana Farber): What is an Inherited EGFR T790M Mutation, and What Does It Mean?

Dr. Lecia Sequist (Massachusetts General Hosp) on Molecular Marker Testing in Advanced NSCLC: What, Who, and When?

Dr. David Spigel (Sarah Cannon Cancer Ctr): What are the Most Promising Targeted Therapies for Lung Cancer in the Next Few Years?

Dr. Greg Riely (Memorial Sloan-Kettering): How Should We Approach Acquired Resistance to Targeted Therapies in Advanced NSCLC?

Dr. Heather Wakelee (Stanford): How Should We Use Molecular Marker Information for Management of Earlier Stage Non-Small Cell Lung Cancer?

Dr. Karen Kelly (Univ. California, Davis): What Molecular Markers Do You Routinely Send for in Your Patients with Advanced Non-Small Cell Lung Cancer?

Dr. Sarah Goldberg (Yale): How Do You Discuss the Pros and Cons of Molecular Testing, with Potential Delays and Need for Rebiopsy?

Drs. Ross Camidge (Univ. of Colorado) and Corey Langer (Univ. of Pennsylvania) Who Do You Recommend Repeat Biopsy for if There Isn’t Enough Tissue for Molecular Testing?

Dr. Bob Doebele: Will We Be Able to Use Molecular Markers and Apply Targeted Therapies to Broader Lung Cancer Subtypes in the Near Future?

Dr. Phil Bonomi: Is Maintenance Therapy after First Line Chemotherapy a Mandate, An Option, or a Neither?

Dr. Alan Sandler: Is There a Danger that the Latest Advances in Molecular Testing Are Only Available in Limited Specialty Settings?

Dr. Ravi Salgia on Management Strategies for Acquired Resistance to Targeted Therapies, Single Focus or More Diffuse

Dr. Rosalyn Juergens: What Novel Therapies Are You Most Optimistic About as Potential Lung Cancer Treatments in the Next Few Years?

Dr. WIlliam Pao on the Goals for Developing MyCancerGenome.org

Dr. Karen Reckamp: Recommending a Repeat Biopsy, at Initial Diagnosis or with Acquired Resistance to a Targeted Therapy

Dr. Geoffrey Oxnard on Managing Acquired Resistance to EGFR Inhibitor Therapy (and Probably Crizotinib, Too)

Dr. Greg Riely: How I Use Molecular Marker Information in Earlier Stage NSCLC Patients

Dr. Lecia Sequist: Can We Bring The Advances in Targeted Therapy to Squamous NSCLC and Broader NSCLC Populations?

Dr. Monty Pal on the Current Best Practices for Early Stage Kidney Cancer

Dr. Larry Einhorn: How Can We Replicate the High Cure Rates We’ve Achieved for Testicular Cancer in a Wide Range of Cancers?

Dr. Larry Einhorn: Will Costs of Care Limit Our Ability to Deliver Cancer Treatments?

Dr. David Spigel: Which Lung Cancer Patients Should We Be Doing Molecular Marker Testing For, and Should We Do “Reflex Testing”?

Drs. Ross Camidge and Corey Langer: Which New Targets and Therapies Could We Bring to the Lung Cancer Clinic in the Near Future?

Dr. Sarah Goldberg: The Potential Value of a Treatment Break as an Alternative to Maintenance Therapy in Advanced NSCLC

What Molecular Markers Do You Prioritize for Molecular Testing in Advanced NSCLC, and Who do you Test?

Do You Seek and Do You Use Molecular Marker Information in Patients with Early Stage NSCLC?

Dr. Pal on the Role of Interleukin-2 (IL-2) in Advanced Kidney Cancer Today

Dr. Monty Pal: Reviewing Bladder Cancer Stages, the Role of Surgery, and the Potential Role of Chemotherapy for Localized Bladder Cancer

Dr. Sandler on Options for Maintenance Therapy: Switch, Continuation, or a Treatment Break?

Dr. Rosalyn Juergens on Managing Acquired Resistance to Targeted Therapies for Advanced NSCLC

Dr. Karen Reckamp: Will Our Gains in Targeted Therapies Be Generalizable to a Wider Range of Lung Cancers?

Dr. Heather Wakelee: My Approach to Repeat Biopsies For Advanced NSCLC Patients Who Have Insufficient Tissue for Molecular Testing

Dr. Geoffrey Oxnard on Translating the Benefits of Molecular Oncology More Broadly: The Tissue is the Issue

Dr. Monty Pal on Leading Options for First Line Treatment of Advanced Kidney Cancer

Dr. Larry Einhorn: What are the Biggest Challenges We Face in Delivering Effective Cancer Care in the Next Decade?

Dr. William Pao on “How Concerned Should We Be About Different Testing Methods, as well as the Heterogeneity of Different Biopsy Results from the Same Patient?”

Dr. Ravi Salgia on “My Approach to Maintenance Therapy for Advanced NSCLC

Dr. Greg Riely on the Most Promising Upcoming New Targeted Agents and Molecular Pathways for Lung Cancer Treatment

Dr. Alan Sandler: My Approach to Acquired Resistance for Targeted Therapies in Lung Cancer

Dr. Natasha Leighl’s Highlights in Lung Cancer from 2012: Developments for EGFR Mutation-Positive NSCLC

Dr. David Spigel: We’ve Probably Made Maintenance Therapy More Complicated Than It Needs To Be

What is the Right Surgery for Early Stage Kidney Cancer?, by Dr. Monty Pal

Drs. Ross Camidge and Corey Langer: How Should We Manage Acquired Resistance with a Single Lesion or More Diffuse Progression?

Dr. Heather Wakelee on the Most Promising New Agents and Pathways for Treating Lung Cancer in the Coming Years

Dr. Lecia Sequist on Relevant Emerging Molecular Targets in Lung Cancer

Dr. Sarah Goldberg on the Utility of Molecular Marker Results in the Adjuvant Setting for Early Stage Non-Small Cell Lung Cancer

Dr. Geoffrey Oxnard on What Molecular Markers to Test for in Advanced NSCLC, and in Whom?

Dr. Greg Riely on “I just found out I have an EGFR mutation, and I’m in the middle of chemo. What now?”

Dr. Karen Reckamp on “Which patients do you send molecular marker testing for, and what tests do you seek?”

Dr. Ravi Salgia: How Do I Discuss the Side Effects of Targeted Therapies, as Compared with Chemotherapy?

Dr. Heather Wakelee: How Should We Manage Acquired Resistance with a Single Lesion or More Diffuse Progression?

Dr. Lecia Sequist: Will New Forms of Mutation Testing Become Available Beyond the Major Research Centers?

Drs. Ross Camidge and Corey Langer: Will Our Gains in Targeted Therapies Be Generalizable to a Wider Range of Lung Cancers?

Dr. Sarah Goldberg: Recommending a Repeat Biopsy with Acquired Resistance to a Targeted Therapy

Dr. David Spigel on the Utility of Molecular Marker Results in the Adjuvant Setting for Early Stage Non-Small Cell Lung Cancer

Dr. Karen Kelly on “My Approach to Maintenance Therapy for Advanced NSCLC

Dr. Phil Bonomi on the Most Promising Upcoming New Targeted Agents and Molecular Pathways for Lung Cancer Treatment

Dr. Greg Riely on Muliplex Next Generation Sequencing and its Effect on Molecular Oncology Practice

Dr. Geoffrey Oxnard: Are Patients or Payers Objecting to Repeat Biopsy?

Dr. Ravi Salgia on “Which patients do you send molecular marker testing for, and what tests do you seek?”

Dr. Larry Einhorn on “What Have Been the Most Significant Changes in Cancer Care over the Past Decade or Two?”

Dr. Rosalyn Juergens on “I Just Found Out I Have an EGFR Mutation, and I’m in the Middle of Chemo. What Now?”

Dr. Lecia Sequist: How Should We Manage Acquired Resistance with a Single Lesion or More Diffuse Progression?

Dr. Sarah Goldberg: What Methods Do I Use to Obtain Samples for Molecular Testing?

Dr. David Spigel: My Approach to Repeat Biopsies For Advanced NSCLC Patients Who Have Insufficient Tissue for Molecular Testing

Dr. Karen Kelly on the Most Promising Upcoming New Targeted Agents and Molecular Pathways for Lung Cancer Treatment

Dr. Phil Bonomi, Rush University: Will Our Gains in Targeted Therapies Be Generalizable to a Wider Range of Lung Cancers?

Dr. Sumanta (Monty) Pal on the Role of Chemotherapy in the Treatment of Kidney Cancer

Drs. Ross Camidge and Corey Langer: Will New Forms of Mutation Testing Become Available Beyond the Major Research Centers?

Dr. Greg Riely: Recommending a Repeat Biopsy with Acquired Resistance to a Targeted Therapy

Dr. Rosalyn Juergens on the Utility of Molecular Marker Results in the Adjuvant Setting for Early Stage Non-Small Cell Lung Cancer

Dr. Lecia Sequist on Multiplex Next Generation Sequencing and its Effect on Molecular Oncology Practice

Dr. Sarah Goldberg: How Should We Manage Acquired Resistance with a Single Lesion or More Diffuse Progression?

Dr. David Spigel: How Do You Discuss the Pros and Cons of Molecular Testing, with Potential Delays and Need for Rebiopsy?

Dr. Karen Kelly: Do You Continue a Treatment Beyond 4-6 Cycles to Exhaust its Benefit?

Dr. Geoffrey Oxnard on the Most Promising Upcoming New Targeted Agents and Molecular Pathways for Lung Cancer Treatment

Dr. Ravi Salgia on the CollabRx System for Matching Patients with Mutations to Clinical Trials

Dr. Larry Einhorn: Will New Forms of Mutation Testing Become Available Beyond the Major Research Centers?

Drs. Ross Camidge and Corey Langer on “Which patients do you send molecular marker testing for, and what tests do you seek?”

Dr. Sumanta (Monty) Pal: What is the Role of Surgery in the Treatment of Metastatic Kidney Cancer?

Dr. Phil Bonomi, How Do I Discuss the Side Effects of Targeted Therapies, as Compared with Chemotherapy?

Dr. Greg Riely on “My Approach to Maintenance Therapy for Advanced NSCLC

Dr. Sarah Goldberg on “I Just Found Out I Have an EGFR Mutation, and I’m in the Middle of Chemo. What Now?”

Dr. Rosalyn Juergens: Recommending a Repeat Biopsy with Acquired Resistance to a Targeted Therapy

Dr. David Spigel: How Should We Manage Acquired Resistance with a Single Lesion or More Diffuse Progression?

Dr. Karen Kelly: My Approach to Repeat Biopsies For Advanced NSCLC Patients Who Have Insufficient Tissue for Molecular Testing

Dr. Ravi Salgia: Will Our Gains in Targeted Therapies Be Generalizable to a Wider Range of Lung Cancers?

Dr. Larry Einhorn: Are You Optimistic That a Supercomputer Such as Watson Will Be Able To Improve Cancer Care?

Dr. Sumanta (Monty) Pal: What Are the Options for Second Line Treatment of Kidney Cancer?

 

We thank these experts for their generosity with their time and expertise in providing this information to the lung cancer community.


Thanks for Being Part of Our Community in 2012: Now Let’s Look Forward to a Great 2013

We’ve just completed our Annual Appeal, and I wanted to take a moment to thank people for their generous support — it is both humbling and gratifying to have so many people express their shared commitment to what we’re doing.

At the same time, I want to wish everyone a happy new year.  Let’s raise a glass to 2013 in hopes that it is filled with a better understanding of cancer biology, several new treatments that will help patients, and great news from all of you about your own results that can remind us of the successes we should be thankful for. 

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Holiday Wishes from Dr. West

Have yourselves a merry little Christmas, or the festive seasonal holiday of your choice.

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As we approach the end of 2012, I thank everyone who has participated here and made our community a richer place for it.

 


Telemedicine as a means of providing access to subspecialist experts across health care systems: Why aren’t we doing this?

As I consider the increasing value of access to subspecialist experts in cancer and other serious medical issues as the volume of new information becomes increasingly challenging to manage, I see ways in which telemedicine could be integrated in large, comprehensive health care systems that are becoming more common in the US and are already the way health care is delivered in many parts of the world. I can’t see why this isn’t being initiated already through the VA system or Kaiser Permanente in the US, or the UK’s National Health Service, etc.  Yet my own system of Swedish/Providence, which includes dozens of centers in the Western US, isn’t leading by example either.  

The first system to do this will improve the quality of the care for their patients and dramatically improve patient satisfaction as well.

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Please Help GRACE with a Donation for our Annual Appeal Campaign

It’s the end of the year, when we think of gifts for the people who make a difference in our lives and donations for the organizations that are helping the world. This year, Dr. Jared Weiss and moderator Janine Thompson are chairing our Annual Appeal campaign.  Here’s their letter that went out to our prior donors, but we’d also like to reach others who might consider a donation to help us provide the support and education that enables so many people to manage better with their cancer.

 

Dear Friends of GRACE,

                      “I wonder if you realise how you touch people’s lives”   – Delialolly1

Imagine that you or a loved one has been newly diagnosed with stage IV lung cancer.  You meet an oncologist who tells you that the cancer is incurable, but is treatable.  He then spends an hour describing your options, but all that you can think about as he talks is “incurable.”  You return home confused and overwhelmed.  Imagine now, if there were a lung cancer information source that explained the basics of lung cancer that you could review at your leisure.  Imagine if it were written in plain English.  Imagine if world experts wrote the content, so that you could trust it.  You don’t need to imagine further—we are describing GRACE.

Now envision that you have a more complex question.  You want to know about all this new molecular stuff that’s driving targeted therapy.  Or, maybe you’ve even heard on the news about the newest results of a clinical trial that was reported at a major cancer conference.  You’re a smart, educated person and you’ve made yourself an educated patient (or loved one)—you want to review the detailed results, but translated into lay English.  Again, look no further—GRACE will be there with a podcast or post.

What if this new targeted agent gives you a rash that itches?  You want information not only from a doctor, but also from others who have gone through it.  Enter the GRACE community and forums.  Here, you can post your question and will receive input from fellow patients, their caregivers, and even thoracic oncologists.  For some patients, GRACE provides information that can be reassuring.

 “…thank you …. For making this whole experience make more sense. I don’t think I would be doing very well right now if not for you and this site, and the great people who give their support”- Double Trouble

“I can’t tell you enough how much your help meant to us all. Without GRACE, my sister would not have had those three extra years which were so valuable to all of us” - Fortmyr

Often, GRACE offers additional options to think about that can directly improve your care.  While other websites offer very general information, GRACE offers specifics (i.e., “Chemotherapy is the main treatment for advanced lung cancer. Your doctor may talk with you about this approach”).  While other websites exist to subjectively sell particular treatments or cancer centers, GRACE is a non-profit organization whose only goal is to provide information as a means of improving the overall medical care for cancer patients.

When GRACE was founded in September of 2007, one lung cancer expert ran the site.  Now, in 2012, almost every major international expert on lung cancer has contributed to GRACE.  We are now expanding to serve other cancers further.  Please spread the word, let everyone know that we’re here to help and interact with them.  Last year, we tackled head and neck cancer and we introduced a new breast cancer blog.  We’re now planning on launching a new blog on pancreatic cancer.  But continuing to serve our current community, and extending to broader cancer communities, requires funding and your support to spread the word.

 

As a moderator and user of GRACE, and as a proud supporter and board member of GRACE, we are honored to serve as co-chairpersons of this year’s annual fundraising campaign. This is the one and only time a year that we push and ask people for support. The continuing support from individual donors allows GRACE to help the tens of thousands of cancer patients and caregivers that visit GRACE throughout the year.  We absolutely need your help to accommodate this growth and continue helping people. Our goal is to raise $50,000 to bring in more expert oncologists to cover other different types of cancers, to improve the website and its functionality for visitors and users, and to increase the number of podcasts and our overall reach. Please consider supporting us by visiting us online at www.cancerGRACE.org/donate to donate securely.  And help us reach out to those who you think would benefit from GRACE.

 

Sincerely,

   

 

 

 

Dr. Jared Weiss

GRACE Board Member and Faculty

Janine Thompson

GRACE Moderator and Community Member


Cancer Pricing is a Game of Chicken, and a Drug Company Blinked

Here’s a very brief video I did on a recent interesting news story about a group of physicians at Memorial Sloan-Kettering Cancer Center who have an expertise in GI oncology and made a institutional policy that they wouldn’t use the newly approved drug Zaltrap (ziv-aflibercept) for colon cancer because it is priced at more than twice the already heady price for Avastin (bevacizumab) but offers no clear benefit.  What is interesting is not just that influential oncologists said, “No — enough is enough! This agent is just not worth its price”, but also that this highly publicized decision led the company selling Zaltrap to lower its price.

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GRACECasts Uncut: A New Video Podcast Format.

We’re going to start doing a different, shorter format of video podcasts, in addition to our slide-based webinars. But rather than write about it, here’s a video that introduces the concept. 

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I’m also doing a series of these for my own institution (Swedish Cancer Institute in Seattle, WA), so I’ll highlight videos I’ve done that are going there as well. Here are a few:

Should there be an age cap for chemotherapy?

Transitioning to molecular oncology

Help! My lung cancer is progressing after a great response on a targeted therapy…what now?

What’s the role of post-operative chemotherapy for early stage non-small cell lung cancer?

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Interpreting Online Health Care Content: Caveat Emptor (i.e. Don’t Be a Sucker)

My mother used to remind me, growing up, to  ”believe half of what you see and none of what you read.”  She wasn’t a conspiracy theorist, and even though I am more trusting than she would favor, I do think it’s very helpful to have a skeptical eye, particularly when reviewing content spreading online or highlighted in the mass media.  Why? Because it’s very important to ask yourself two critical questions when assessing the quality of the information you’re getting:

1) What are the qualifications of the person relaying the information? 

2) What are the motivations of the person/institution relaying the information?

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A Brief Radio Piece on the Value of Online Patient Forums

Just a brief note that I was part of a brief radio piece this morning on KIRO Radio 97.3 FM in Seattle, discussing the growing relevance and value of online communities of patients in terms of their role in medical care, potential to accelerate research, and just to gain a better understanding of the tolerability of treatments and patient perceptions of their treatments.  We spoke for more than 20 minutes, but with probably less than 60 seconds of it included in the brief story, it doesn’t do justice to the complexity of the issue.  Still, it’s one more piece of momentum for the growing role of patients as more active participants in medical management and research.  

The 3-minute piece is under the list of related posts, below.

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