Monday, May 24, 2010

Melanoma symposium--on caffeine

I’ve never before been in the company of people who have all been diagnosed with melanoma, but that’s where I was on Saturday along with 100+ attendees at a “Living with Melanoma” symposium. This event, held at the Fred Hutchinson Cancer Research Center in Seattle, was well-organized with several helpful talks on clinical research and patient care. I’m glad I went.

This being Seattle, the coffee was hot and strong, of course. My buzz lasted the long drive home.

The symposium was a missed opportunity, however, to better illuminate survivors like myself who crave a contextual understanding of melanoma. I understand that you can only cover so much ground in a single day, but much of the program seemed randomly selected and poorly presented. The low point was a snoozy hour-plus devoted to lymphedema, a topic of secondary interest to most of us present. What needed to be said could have been covered in 20 minutes.

The miracle is that an annual symposium like this even exists. Melanoma is not a rare form of cancer, but it lacks the critical mass in the patient and healthcare community that you see, for example, with breast cancer. What it has going for it are some ferociously dedicated clinical researchers and the Melanoma Research Foundation (MRF), which co-sponsored and underwrote the event. There are some very smart people working tirelessly to wrangle resources to educate people about the risks of skin cancer, and to investigate new treatment regimens. An obscenely expensive but so-far fruitless search continues for a breakthrough drug in what’s been trenchantly called a graveyard for clinical researchers.

(The process of developing new cancer drugs in general is defined by failure, as Malcolm Gladwell has written in the current issue of The New Yorker.)

While treatment regimens for melanoma are still arguably in the Dark Ages, there are glimmers of hope. Several new drugs in clinical trials have been shown to work—however weakly and unpredictably. There is at least a short list of treatment options for patients with advanced melanoma, which could not have been said a few years ago. Some patients are living longer and a very small number who would have died now appear to be in durable remission. It’s sobering to think that billions of dollars have been spent just to get us to where we are today. The impact on long-term survival of the two drugs that are FDA-approved is shockingly modest, and we appear to be many years from turning melanoma into a chronic, manageable disease like AIDS or type 2 diabetes. We’re barely out of the gate in this horse race.

Given that life is lived in the meanwhile, my challenge is to better understand the existing options and to know what makes sense given my circumstances. I didn’t leave Seattle with a much better idea of that, although I learned that I’m not alone in my frustration. A talk on what’s called adoptive T cell therapy explored one of many avenues of research being pursued in melanoma therapy. A later overview on systemic therapy barely mentioned this work, but did include a slide that showed the various types of clinical trials under way at Fred Hutchinson. This is the type of comparative information I crave. I wish there had been more of it.

Casual comments spoken by the executive director of the MRF in the lunch line about two investigational drugs were also revealing. Tim Turnham’s only visible role in the program was a short pep talk he gave just after lunch. He provided more useful information in 10 minutes than most of the clinicians on the program, although I believe he exaggerates how close we are to turning a corner on melanoma treatment. It's his job to keep the troops motivated. His enthusiasm was a little over the top.

There was also helpful perspective provided by the program director, Dr. David Byrd, who fielded many of the questions from the audience. He confirmed, for example, that 80% of melanoma patients need surgery only, and never proceed to drug or radiation treatment. He also stated flatly that blood work to monitor recurrence “is a complete waste of time,” and that the usefulness of follow-up scans for asymptomatic patients “is highly suspect.” Those are controversial statements, and it’s helpful to hear them spoken by such a big gun. I’d like to have heard more from people like Turnham and Byrd, who in their respective areas of expertise have a broad perspective on melanoma. The esoterica of treatment that otherwise filled the program should have been reigned in.

I strive to make sure that what I believe to be true about my melanoma can be confirmed by reliable sources. This due diligence helps to assure that decisions I make about my treatment are correct, so much as that can be determined. The Seattle symposium helped with this process. There is no single definitive source of information for people with melanoma, which leaves me with the perpetual task of staying current with the research and best clinical practices. Because of its biological complexity, melanoma is an especially erratic target. For clinical researchers, its study is the challenge of a lifetime.

In an ideal world, patients could trust their oncologists and their ancillary staff to take the time and effort to educate them. Prudent decisions could then be made in concert with other medical professionals and family members. This would, among other things, eliminate the need for patient symposia of the type put on by MRF. Until we’re all sprinkled with fairy dust, I will persist in seeking out the best information independently and not rely exclusively on what I hear in the exam room. This takes time, energy and, on occasion, an extra shot of java.

1 comment:

Steve said...

Although the information doesn't sound life-changing, you'd be kicking yourself if you'd passed. You probably confirmed some things and dispelled other beliefs. At least you're better informed for having gone. By the way, I'll trade you my cardiologist for your surgeon...