New Faces at GRACE

   I’m pleased to announce that several new expert faculty members are joining the ranks here, in addition to myself and Dr. Laskin, who has been helping out here for several months. The whole idea was not to have me monopolize the conversation or pretend I alone had all of the answers. Instead, I wanted to get the conversation started, see that there is a value in this kind of information, and then bring in other experts to discuss the various ways to manage cancer issues. On some issues we all agree. For other issues, we may describe our own different philosophies and management approaches, which will illustrate that there is often no single right way, even among people who have access to the same information.

Here are several invited expert colleagues who have either joined in recently or are planning to jump in very soon. In alphabetical order…

 Dr. Patrick Bufi is a naturopathic physician at Northwest Natural Health Specialty Care Clinic in Seattle. He has a particular focus on oncology and pulmonary disease and has been participating on the discussion forums. We expect to see some posts by Dr. Bufi in the section on Complementary/Alternative Medicine in the near future, and many of you have already read some of his responses on in this area on the discussion forum.

 Dr. Shirish Gadgeel is a medical oncologist who is currently an Associate Professor in the Medical Oncology Division at Wayne State University Karmanos Cancer Center in Detroit, MI. His particular expertise is in lung cancer, where he leads several regional and national trials and speaks on a wide range of topics. He will be writing posts and answering questions in the lung cancer and cancer 101 sections here.

 Dr. Zelanna Goldberg is a radiation oncologist and biologist with expertise in translational medicine, the intersection of the lab and the clinic. She has been involved with important clinical research at the University of California at Davis and other work with the Southwest Oncology Group. She’s just jumped in to help answer questions in the radiation oncology section and other places, and she’s working on topics for some full posts on topics in radiation therapy.

 Dr. Cheryl Ho is a medical oncologist at the British Columbia Cancer Agency in Vancouver, BC, where she has a particular interest in lung cancer as well as changing patterns of clinical practice. She will be contributing to discussions in lung cancer, cancer 101, and cancer treatments/supportive care sections of the site.

   I will really look forward to having something more like panel discussions than single expert Q&A when we can get a real conversation going. Practicing physicians enjoy panel discussions because they provide a sense of how people think, where ideas converge and where they diverge. So if you see new names and faces up answering questions and providing information in the posts, know that they’re invited additions — part of a growing process for GRACE into a greater diversity of opinions (even if the ones that differ from mine are wrong).

   Be gentle with them.

New York Times Front Page Article on Cost vs. Benefits of Cancer Treatments

Today’s NY Times included a high profile article about the difficult balance between the clinical value of some expensive cancer therapies and their financial value. I think it did a fair job of portraying both sides of the issue — that therapies like avastin, erbitux, and others are certainly priced aggressively for the modest but generally convincing benefits they provide, leaving some people wondering whether they have enough impact in a non-curative setting to justify the rather high costs. Contrasting this with inexpensive medicines (such as if an off-patent chemo were found to be modestly helpful) or expensive medicines that can be expensive but seem convincingly justified by the striking benefits (such as gleevec for chronic myelogenous leukemia, or CML), the authors offer that the costs to the patient personally can be daunting if they are paying 20% of what amounts to thousands of dollars per year, and of course also the costs to society. While countries with single-payer medical care, ranging from Canada to the UK to many/most other parts of the world, have faced questions of whether expensive cancer drugs that don’t increase the cure rate are “worth it”, the US system has not had to face much means-testing.

But with costs of cancer treatments rising rapidly, and with many competing needs, such questions are creeping into US-based discussions more and more. In the commentary about the plenary presentation of the FLEX trial that demonstrated a modest but statistically significant survival benefit in advanced NSCLC, Dr. Tom Lynch from Massachusetts General Hospital was charged with the task of providing some context about whether the 1.2 month survival benefit could justify the anticipated costs.

I think we’re going to be facing more and more of these hard questions, ones for which I don’t have any good answers. As the article notes, through the words of one of the quoted physicians (Dr. Eric Winer, a breast cancer specialist at the Dana Farber Cancer Institute in Boston), we may conclude that the cost-benefit (now financial as much or more than our usual mindset of weighing risks of side effects and quality of life issues vs. improved response rate and survival) is not favorable for society as a whole, but you have a different perspective when you have a patient looking for options in front of you.

I wonder whether the cost of things like co-payments that may run into thousands of dollars is now a factor for patients and their families. I certainly hear patients and families express a desire to explore “anything, regardless of the cost”, but is this really something that just doesn’t or shouldn’t enter into the picture? I can understand a “go for broke” (literally) approach much more in a curative setting, for which we really haven’t seen much controversy. But would people be willing to have their families go into debt for a non-curative treatment that would be expected to extend survival by 2-3 months? Is it more the hope that a person will be one of the major beneficiaries that gets many months or even years of benefit, and it’s not possible to put a price tag on hope?

These aren’t pointed questions for which I have a presumed answer. I can’t say how I’d feel if it were my father or wife or closest friend facing cancer. But I’m interested in hearing from people who face advanced cancer themselves or in someone very close to them, “is there such a thing as a cancer treatment not being worth it financially?”.

Absence of Proof vs. Proof of Absence: Do We Need a Controlled Trial of Parachutes for Sky Divers?

   Throughout this site, we try to rely on the strength of evidence to support the value of one treatment over another.  This is based on a growing trend of evidence-based medicine, by which we shape our management decisions following the lines of clinical trials.  But this approach of “useless until proven valuable” is really the opposite of where many cancer patients feel that the onus needs to be.  When your options are not attractive enough, when oncologists agree that a cancer is incurable and may not even have any treatments of value, patients don’t usually demand that a new option have proven benefit.  Instead, many patients are interested in any treatment that has promise and provides some hope of clinical benefit.  And this is at the center of the tension that patient advocacy groups are experiencing with the FDA, because the FDA feels a need to protect patients against unproven cancer therapies, while patients often feel that they have nothing to lose and and desperately seek more options, even those in early development and with unknown value.

Have we proven the value of parachutes? 

   I just learned of a publication from a few years ago in the British Medical Journal that highlights a shortcoming of the evidence-based medicine approach by illustrating that we don’t actually have any good evidence from randomized, controlled prospective trials that proves the value of parachutes for “gravitationally challenged” people, namely those falling out of airplanes (paper here).

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Post Comments Trapped in Limbo

   Several of you who have written posts in recent weeks may have noticed that they didn’t appear, at least not promptly.  Unfortunately, the automated screening software appears to be set a little too high on vigilance, not only filtering spam, but holding probably half or more of your appropriate comments until I found them and released them from limbo.

   First, please don’t take it personally.  I’m working with the web guys on adjusting the threshold so far fewer of your comments will be detained.  Second, we’re also going to work on a better way to alert me that these are there and in need of attention.  With several verticals, a bunch of comments didn’t get approved by me for far too long. 

   I’m sorry about that.  It’s growing pains, and we’ll make it work better.  Please keep the faith and post your comments — we want to hear from you!

Please Provide Support for GRACE

   For the past 18 months, I’ve spent 1-3 hours of just about every day answering questions and writing new posts.  As many people have noted, this time comes at the cost of personal time with my wife and children and other projects I do, including work I would be paid to do.  I’m happy to do it, because I believe it’s important, and I can see that many people need the service.  Every day, people offer their profound thanks.  But GRACE actually needs more people to show some support; I feel like I’m nearly the only person really making a sacrifice, while many people are benefiting greatly.   I have tried hard to not guilt people into providing support, but sitting by and waiting really doesn’t work.  This money isn’t for me personally (I’m not planning to receive any money for my time on the site), but I need help from other people, and most of them will really need to be paid at least a modest amount to justify the time they’re not spending on other activities, many of which could pay better.   And I, too, need to get a better signal that other people value this enough to actually contribute.

   I and the board of GRACE have been discussing a couple of ideas for ways to show support in a more concrete way.  One is to sponsor specific posts, for something like a scheduled donation of $25/month (or a discount for a yearly rate of $250).  There will be a box message, with or without a picture of a person, saying that a certain post is provided through the generous sponsorship of Mrs. X, etc.     Other people who want to have an even greater impact can sponsor entire categories or sections, or sponsor a position for an additional faculty member, such as a university’s endowed chair positions.

   The second concept is to provide tribute messages, which will be on pages that are linked from our support section and include boxed messages of varying sizes, like buying an inscribed brick at the playground or an ad in the local school yearbook.  These can range from a short message of support (”In honor of Mom’s great scans, March 2008″) or remembrance of someone, to larger boxes that can include significant text, pictures, whatever.   The costs for such messages will likely start at $50 and go from there.  These pages will be searchable, so you and others can always find your messages of support.

   I want people to be able to point to something their contribution has enabled, to take pride in how their support is enabling GRACE to help other people.  You can have your name or that of someone you love providing sponsorship of this critical education, and/or you can provide a tribute on those dedicated pages that provides a personalized message and communicates that you’ve supported this worthwhile effort.

   You can provide comments after this post (click on the title to open up the comments), or you can e-mail me (west@cancergrace.org) with questions or comments or offerings.  We’re building these mechanisms, and anyone who provides support now will have their contributions applied toward whatever they’d like to sponsor.  We’re bringing in new people, but we need everyone’s support.  Plenty of people gain valuable insight and support here.  Please reciprocate by supporting GRACE. 

Using the Profile and Other Forum Features

   I just wanted to highlight that there are several nice features of the new forum software, including ways to add some background in a profile, send personal messages to other members within the website and without publicizing e-mail addresses, and other options.

   Starting with managing your profile, once you log in, you can go up to the menu at the header and select Profile, which lands you on a summary page.  There is a menu on the left side of the page that looks like this:

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Transition to GRACE Forums

It’s getting to that time of actually moving it all over to GRACE. The web guys are planning to make a few more edits early this week, then update the posts to add content put on OncTalk over the last few weeks, and then have new content go over to GRACE, which you’ll notice is divided into different subjects, both in division of the posts and in the fourm questions. Lung cancer is a big one, but now Leah and potentially other contributors will have a separate social work/coping with cancer section, complementary medicine will have posts in that separate section, questions about the various cancer treatments and supportive care is on its own section, etc. One key reason that sections on symptom management and side-effects of treatments are a distinct section rather than part of the lung cancer section is that pain control or side effects of tarceva or chemo or whatever are generally the same for a lung cancer patient as well as a colon cancer patient. Eventually I may have experts in other types of cancer join in on a separate subject section for colon cancer, prostate cancer, etc., and this way it’s possible for everyone to share access to tips on managing side effects or cancer symptoms.

In anticipation of the move to the new site, I wanted to give people a chance to navigate the new forums and leave some questions/comments, just testing the waters before we freeze the OncTalk forum section and leave it for browsing but no new threads or comments on existing threads. Importantly, the old forums will be searchable from the GRACE site, which will return results of content on both the GRACE site and the OncTalk forum pages.

Your current log-in should work. Once in, it should now be much easier to edit your profile, add an avatar, and now send private e-mail to other users. We can change the structure and certainly fix bugs (and I’m sure there will be some bugs) — just let us know. The forum page is here. Feel free to navigate around the rest of the site, but know that there are still a few small edits we’re making (including updating the supporter list, so for those of you who have donated in the last month, know that the page will be updated to recognize you within the next 48 hours).

So look around, please feel free and quite encouraged to leave questions and comments there. For the next few days at least, I’ll plan to check and answer questions at both the OncTalk and GRACE forums. But know that in a short time we’re moving exclusively to GRACE, so the OncTalk threads will be readable but frozen.

Thanks, and post at the GRACE or OncTalk forums, or e-mail me at west@cancergrace.org if you have questions, comments, or bugs to report.

4th Annual Multidisciplinary Interactive Thoracic Oncology Conference (MITOC)

(Click on image to enlarge)

Tomorrow we start our fourth MITOC program, a meeting here on the Seattle waterfront that brings together a group of national experts in pulmonology, surgery, radiation oncology, and medical oncology to discuss new information and options for managing the tough real-life lung cancer cases that don’t have a straightforward answer. We started this conference for our medical colleagues, knowing that it’s hard to learn that much from 10 hours of one lecture after another, but it’s much easier to learn by doing and discussing. Each year, I work with great thoracic surgeon Eric Vallieres and expert radiation oncologist Vivek Mehta from my own institution to put together a collection of tough cases that help frame clinical dilemmas that become a springboard for rich (and often slightly heated) discussion. We present a sketch of how a patient presented, show images from their scans, then ask the audience and faculty in several steps as the case develops what they would do next among several reasonable options. We have a few short lectures, but the majority of the content is in the form of the discussions among the faculty panel members about the pros and cons of various approaches, along with comments and questions from our audience of doctors who navigate these challenges every day.

Both the audience and the faculty enjoy learning how other smart people think about managing tough cases. Hearing other points of view helps us to avoid becoming trapped in my own interpretation and treatment style, or having the same group of doctors from an institution become an “echo chamber” that becomes insulated from other approaches. There are clearly many ways to approach the cases that fall between the cracks, and it may be refreshing or mortifying to see that even the experts often don’t reach a unanimous (or even consensus) answer on the best course of action.

Here are the basic outlines of thorny cases we’ll be covering this year:

1) An elderly patient who is on the border of feasibility for surgery for early NSCLC

2) A young patient with apparent residual viable tumor after chemo and radiation for locally advanced NSCLC

3) An 81 year old never-smoking Asian woman with stage III NSCLC

4) A middle aged woman with newly diagnosed extensive SCLC

5) A 54 year old man with a solitary brain metastasis and a small NSCLC tumor in the chest

6) A 63 year old man with a large mediastinal mass that is ultimately diagnosed as thymoma (a topic not covered yet here)

7) A woman with a Pancoast (superior sulcus) tumor of borderline potential resectability

An elderly woman with metastatic NSCLC and a central tumor wrapped around a major blood vessel

In the next few weeks I’ll try to present information on these cases and some of the dilemmas and debates that each introduces.

If I’m a little slow on responding, it’s because this is going to be most of what I think about and work on until Saturday afternoon.

More later.

Perceptions of Chemo: As Bad As Feared?

The National Coalition for Cancer Survivorship (NCCS) is the oldest survivor-led advocacy group, and they recently released some highlights of their study on perceptions of chemotherapy vs. the experience of patients who actually underwent chemotherapy for a cancer in the last few years. Because several membes have raised questions of whether the treatment is likely to be worse than the disease, I thought the results of this study would be of interest here and that members might want to add their own impressions.

The study was sponsored by Harris Interactive and sponsored by NCCS along with the large pharmaceutical company sanofi-aventis. In November of 2007, they questioned 326 adults who had received prior chemo in the past five years for a “solid tumor” like lung or breast or colon and in contrast to “liquid tumors” like leukemia and multiple myeloma. It focused on attitudes toward chemotherapy before and after actually receiving it.

It probably doesn’t surprise people that 83% of participants reported being at least “somewhat fearful” about chemotherapy beforehand, but after receiving it 62% reported having had misconceptions about it and only 38% felt that their fears were justified. It wasn’t completely trivial: 94% of patients reported some side effects, but only 14% reorted that chemotherapy was very difficult. In contrast, nearly one third (32%) felt that chemo was easy or even very easy for them. Importantly, 90% of those surveyed noted that chemo gave them hope, and 94% would recommend it to someone else with cancer who had been recommened to receive chemotherapy.

Part of the focus was also on communication about the treatment plan. Only 44% of patients received written materials about their chemotherapy plan before treatment, while 78% who did not felt that a written plan would have been helpful. A treatment plan was given to 35% of patients after their chemo had been administered. Better communication appeared to improve the level of comfort that patients had with the chemo experience.

The survey is part of a larger survivorship program called Surviving with Confidence that includes a video of real patients discussing their cancer, chemotherapy, and survivorship issues that have followed. This free video is available here.

I think it

Happy Easter!

Just a light-hearted reminder that it could always be worse. Although I think this comic says it better:

Perhaps a tad off-topic, but we’ll get back to cancer momentarily.

Enjoy the day and have a chocolate bunny.