GRACE :: News/Info

Dubious ASCO Highlights, BS Endpoints for Ineffective Drugs, and the Credibility Gap

As many people in our readership know, the ASCO conference is the biggest and most important cancer conference of the year, and there are many competitors for the biggest highlights.  I was therefore annoyed to see that the top-listed highlight in the Medivizor blog description of ASCO highlights, for lung cancer and in general, was about anamorelin, an agent tested to combat cancer-related cachexia (severe weight loss) and associated weakness in patients with lung cancer.

You may note that this agent hasn’t received a lot of mention on the GRACE website or many other media sources.  It doesn’t actually crack the top 100 (and probably not top 250-500) top findings from ASCO.  Why does it merit mention as a highlight in some places? I’d bet good money that they are paid to highlight this work to patients and mislead them into thinking that the “positive” results actually matter.

Bullshit detectorI haven’t really spoken about anamorelin on the GRACE site before, even though their approach represents a lot of what we should disdain about drug development for cancer. My restraint has stemmed largely from the statement ingrained by my mother (and I’m sure by many of your parents as well: “If you don’t have anything nice to say, don’t say anything.” I’ve felt that in the absence of evidence showing some meaningful benefit, anamorelin doesn’t merit the time or effort to discuss it here. I’m certainly not the only one — of the 100 or more lung cancer experts I spoke with at ASCO, anamorelin was mentioned by exactly NONE of them — with good reason. It doesn’t deserve to be on the radar of highlights in lung cancer or any cancer. So why would it be front and center on a patient-oriented ASCO summary? Either anamorelin’s manufacturer paid for it, or the author is very gullible and not qualified to provide commentary about ASCO highlights.

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Introducing the New GRACE Cancer Video Library!

GRACE CVL Logo 1400x420 v03b MAIN

Over the next several weeks and months, you’ll see the roll out of a steady diet of new videos in a slightly different format. Historically, we’ve captured talks primarily oriented toward our live audience at conferences and edited them into pieces to offer people online. While certainly a helpful resource for many people, it is optimized for the live audience, and we simply do the best we can for the much larger number of people who view the content as a podcast. The video pieces are often long and may just split a 20-30 minute talk into two parts that cover many questions in each. Some of these have been done with my rudimentary videography skills and a handy cam, leading to a rather low quality A/V experience for the audience.  And the topics are a collection of issues I and other faculty members happen to think of as the most timely issues.

Our new offering will be in a comprehensive GRACE Cancer Video Library, still using a video format, but optimized for an online audience. How? Each video, recorded by a real videographer with more professional sound and lighting (though not makeup or a teleprompter). Each will cover a specific question/topic in about 2-5 minutes, so within someone’s realistic attention span, with the faculty member speaking to the video audience.  These will be able to be readily viewed on a mobile device anywhere, as well as on a laptop or desktop computer. In addition to watching on video, it will be possible to download a transcript with any figures included. 

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This Is Not a Request for Donations…

GRACE helps patients and their families figure things out during incredibly challenging times. 2015 Spring Appeal Collage  We know what you are going through, as much as any other person not living in your shoes can. 

We are with you.

So it makes us a little squeamish to ask you for a donation. We raise money in numerous ways so that we can continue to serve you without asking for too much too often. But occasionally we need to come to you for help.

Instead of me writing about why you should give to GRACE, can you take two minutes to watch the video below? It does not feature Sarah McLachlan singing over sad puppies but it does illustrate – over very uplifting music I might add – the work that we’ve done over the past year and the plans we have coming up.

And if, at the end of those two minutes, you feel compelled to give $100 or a recurring monthly donation of $10, well then we all win. 

Thank you.

Carlea Bauman
GRACE Executive Director


Watch Ken Burns’s Documentary on the History of Cancer, Adapted from “The Emperor of All Maladies” This Week on PBS

Starting tomorrow, Monday, 3/30, and running over three nights, our US-based audience can tune into their public broadcasting station (PBS) to watch a cancer documentary unlike one ever produced. Ken Burns, the definitive historian documentarian of our era, who has covered topics ranging from the American Civil War to Prohibition to Jazz to baseball, has produced what we should all expect will be the richest history of cancer ever portrayed, using the excellent Pulizer Prize-winning book “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee as the leading source material.

Story of Cancer emperor of all maladies

This is a widely anticipated event throughout the cancer world.  The US National Cancer Institute (NCI) will be leading a “live tweeting” event throughout the broadcasting of each episode, about which you can learn more here.  I’ll be participating in that as well as upcoming commentary on Medscape that provides additional perspective from those of us living “the story of cancer”. For that matter, it’s likely that everyone in the audience is also part of that story, so you’re encouraged to watch and participate.

Though I haven’t yet seen the documentary, I’ve read the book and therefore have a fairly good idea of the breadth of what it will cover. In the wake of its presentation, I’ll offer my impressions of what we can expect as the biggest changes for the next several years, the present and future chapters of this ongoing story.  Here are my top 5 truly cancer world-changing events occurring right now, in real time, that will form the core of the next 10 years of cancer care:

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Why I Give to GRACE

After she developed lung cancer in 2007, my wife Barb would log onto GRACE – the marvelous resource founded by Dr. Howard Jack West – for information that would allow her to play a proactive role in fighting her disease.

“I wish I could do something to help  Dr. West expand his great work,” Barb would say time and again during the years she battled lung cancer before passing away in December, 2013.

Barbara Murphy

Barbara Murphy

Now she’s getting her wish: Barb’s family and friends have created the Barb’s Beer Foundation and a light-bodied Northwest amber called “Barb’s Beer.” The foundation is signing up restaurants and taverns to put the beer on their taps to generate funds to support Dr. West and GRACE, as Barb would wish. We are lucky to have a friend, a talented brewmaster, Chuck Hohing, who created the recipe for us, based on input as to the kind of beer Barb – a marathon runner and beer lover – would like.

Northsound Brewery in Mt. Vernon produced the first batch commercially and we introduced Barb’s Beer in Bellingham, Washington this past July at LaFiamma Wood Fire Pizza. LaFiamma was Barb’s favorite restaurant where she and I would go every Friday for beer, pizza and “great conversation,” as Barb described – catching up on the week’s events in each of our lives.

To no one’s surprise Barb’s Beer is great-tasting and became the best selling beer at LaFiamma over the summer, raising $3125 for GRACE from July through September. Now five restaurants in Bellingham have signed on to serve the beer and we’re getting ready to expand to Seattle in early 2015 and then beyond as we strive to create an “engine” that can generate funds for GRACE over the long-term.

Presenting the first Barb's Beer Foundation check to Dr. West

Presenting the first Barb’s Beer Foundation check to Dr. West

Tom Douglas’ Serious Pie Westlake, one of Seattle’s leading pizza restaurants, will kick off the expansion to Seattle on February 11 – from there the plan is to expand to restaurants throughout Seattle as a platform for national expansion, including in New York City and Boston where we already have interest.

Why all this effort? First because it fulfills Barb’s desire to support Dr. West who was so kind and caring to her during the six years of her illness, as he is to all his patients. But also because GRACE is an ingenious concept that uses digital means to provide leading physicians and researchers around the world with an opportunity to share their findings on promising trials at the speed of light. That speed empowers patients to take the time to learn more about their disease, and that in turn makes them proactive agents with their physicians in treating their cancers.

That’s something worth contributing to, and in the case of Barb’s Beer that’s worth raising a toast to – the idea that one day with everyone working hard in their own way to channel support to GRACE, Dr. West and his colleagues may well produce a cure that could save someone’s life – so that another family doesn’t have to lose the person dear to them.

Please consider making a donation to GRACE today.

Donate buttonTom Murphy (“usanice1″) is Director of Human Resiliency at Fordham University and the husband of Barbara Murphy.


Learn more about Barb’s Beer at http://www.barbsbeer.org/.


 


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