New Post Feature: What I Really Do

   We’ve now got a couple of hundred posts from the last nearly two years, and frankly that’s presented the new dilemma of making it hard to find the general summary information people want.  There are a a few dozen posts about first line treatment of advanced NSCLC, for instance, but many visitors to this site may just want to start with one or a few posts that summarize the highlights, and they can chase down details if they want to.   By the same token, many of the posts are filled with raw numbers, which some people like, but plenty of others may not prefer, either because they actually don’t want to see numbers, or because they want the short answer and don’t need to see the evidence (trust me — I’m a doctor…).

   So what I’m thinking is that while it will still be helpful to add posts on new treatments and new developments, similar to the core concepts should be a summary folder of “What I Really Do” that describes the treatment approaches, the actual combinations we prefer, and how we make decisions for a particular treatment setting.   It can be specific to each faculty member — so people here can see what I do vs. what one or more of the other faculty members do in this setting.  Sometimes we’ll agree, and sometimes we won’t.  It’ll be interesting to see where we converge and where we differ – we won’t do everything the same way, and people can see that even people with access to the same information, all experts in the same subjects, can still have plenty of differences.

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Developing an Index of Abbreviations and Glossary of Terms in Cancer Medicine

I try to describe the terms in posts and comments, but some people had suggested a glossary of cancer terms and abbreviations that are commonly used here, on slides, doctor’s notes, etc. This is my first attempt to develop something fairly comprehensive, but I’m sure this isn’t everything. Please add your suggestions for terms or topics that would be helpful to add to this.

Once we get it pretty settled, we’ll make it a permanent link from throughout the site that people can access if they encounter an abbreviation or term that they don’t know.

Common Abbreviations/Glossary of Terms in Oncology

ADLs - activities of daily living

ANC - absolute neutrophil count, the absolute number of bacterial infection fighting blood cells – low means notably higher risk for infection

BAC – bronchioloalveolar carcinoma, a unique and uncommon subtype of lung cancer

CR – complete response (after treatment), leading to no evidence of disease (NED)

CT – computerized tomography, “cat scan”, a detailed look at the body at varying levels internally, “slice by slice”

CTCs – circulating tumor cells, in blood

CT/PET – a combined scan that does a simultaneous CT, which measures the shape and size of body structures, with PET, which measures metabolic activity. The images can then

CXR – chest x-ray

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Bill to Have FDA Regulate Tobacco Under Consideration by Congress

  Congress is preparing to vote on a bill that would give the FDA the opportunity and responsibility to regulate the tobacco industry.  The FDA would have the authority not to eliminate commercial tobacco, but it could eliminate added harmful ingredients while reducing tobacco levels in products.  At the same time, it would have the ability to restrict tobacco advertising.

   While Philip Morris is in favor of this bill, along with the American Cancer Society, American Lung Association, and American Heart Association, the rest of the tobacco industry is against it, as is President Bush. 
 
   There are a few reasons that are offered to not support the FDA overseeing tobacco products in the US.  The first is that the FDA is widely recognized to be insufficiently funded to manage its responsibilities for oversight of food and medicines, so there is concern that this would further over-extend the agency.  But funding for tobacco regulation would be limited to that obtained from “user fees”, money that they industry must contribute for its own oversight.  This is the same arrangement used with the pharmaceutical industry, which leaves some people concerned about a level of conflict of interest when FDA salaries are paid from the companies being regulated, but in an era of declining federal budgets, this is the imperfect system we’ve got.  And it would apply to the tobacco industry too.  But its important to note that if the federal government feels that the FDA has an insufficient budget to do the job, they have the power to change that budget.

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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.