Monday, May 14, 2012

The good, the bad and the downright weird

When you have melanoma and end up spending most of a day with dozens of other people with melanoma, doctors who treat melanoma and scientists who investigate melanoma, it’s logical that a melanoma-fest should ensue. The melanoma patient symposium held Saturday at Fred Hutchinson Cancer Center in Seattle did not disappoint in this regard.

I learned a few things, I made some new friends, I had a few of my suspicions about the melanoma industrial complex confirmed, and I laughed at the occasional weirdness of it all.
This was my third time around at this annual event, which is underwritten and promoted by the Melanoma Research Foundation. The MRF is the oldest and largest patient advocacy organization in the melanoma world, as they like to remind everyone. I appreciate the trouble to which they go to provide these forums for folks like me who follow the science and clinical practice of melanoma therapy. Heck, they’re free and they never run out of coffee, so what's not to like? I always learn something useful, and I love being able to speak informally with luminaries. The program itself was wildly uneven in quality, as usual, but it helps to just hear the jargon, even when a speaker is a dud, and to learn how to correctly pronounce words like adjuvant and vitiligo.

I was especially impressed by Dr. David Byrd, the program director and chief of surgical oncology at the Seattle Cancer Care Alliance, and Dr. Kim Margolin, a melanoma specialist at the Hutch. Both show a generosity of spirit that is rare in oncology. I asked Margolin after the morning session what she thought about Yervoy versus interleukin-2 for systemic treatment of advanced disease. She gave a straight, gracious response without a trace of the attitude I often get from smarty-pants doctors. This symposium is small enough you can sit with the experts at lunch, if you want, and pick their brains—and you don’t need to show proof of insurance for the opportunity.
It’s easy to make friends with people who share a disease like melanoma, as most of us are pretty compulsive about telling our stories. I recently made contact online with a woman about my age who is bright and articulate and whose experience with melanoma mirrors mine in certain ways. We met at the symposium and sat together. We share the conviction that you can’t always depend on medical professionals to act wisely on your behalf; you have to be your own advocate. And to be that, it helps to have the experience and insight of others who share your circumstances and against whom you can test your understanding of things. It was great to meet her and I hope we can be a support to each other.

I should add there is shared sorrow in hearing the particulars of someone else’s cancer journey. We all know that melanoma will deprive many of us of years of life; we just don’t know for certain who and how many. Some of the patient stories we heard at the symposium practically stopped my heart, and I realized anew how blessed I’ve been to have an indolent form of the disease.
The biggest disappointment of the day for me was the willingness of an academic dermatologist to give the tanning industry a pass for its complicity in the epidemic of skin cancer. Indoor tanning continues to grow in popularity and its business lobby seems fully up to the task of defusing the medical arguments against it. As evidence accumulates on the DNA damage caused by UV energy (both indoor and out), I think dermatologists have a moral obligation to act aggressively against it. I wish I had heard more passion from the speaker about this topic. A room full of people who spent too much time in the sun or in tanning booths was not the place to soft pedal an issue that needs immediate, aggressive action.

He's my hero, so please
don't desecrate his music
The weirdest moment came when the executive director of the MRF broke into song and belted out the Pete Seeger number, “Step By Step.” The point I think he was trying to make was that the fight against melanoma can be won in small increments and that, in fact, significant progress has been made. This is a message that would undoubtedly resonate at a fund-raising banquet, but seemed totally off-key delivered to people who may die before something comes along that might save them. Survival statistics for people with advanced melanoma remain dismal and it will probably be years before that changes. There’s an important distinction between being hopeful and making a PR pitch. I’ll believe we’re at a tipping point in curbing melanoma when we get past the sensational case studies and see some rigorous population-based statistics that prove it.

And the next time someone at a melanoma meeting is tempted to dip into the Pete Seeger song book, I dare them to go all the way and lead a sing-along version of “Guantanamera."


RBS said...

Peter thank for you sharing your visit to the symposium. I'm now week 5 into Zelboraf, in a weird way I'm sorry you're not Braf pos. I'm responding well. i'm actually having normal days again and 4 weeks ago my radiation oncologist told my wife and I that if some form of chemo didn't work this was my last spring. thank God for providing Zelboraf in time for me. I know that it's likely my cancer will become resistant to it so i'm curious to hear what Dr Margolin said about Yervoy vs IL2. My medical oncologist said last week when I asked him about our fall back plan that based on my current state and what's available we'd move to Yervoy when the Zelboraf stops working. For now, I'm grateful, faithful and happy. my wife, oldest daughter and I are visiting my youngest son who's in the bush in Kenya in the Peace Corps. for by the end of summer i will have been in Nairobi, Mombasa, Luma, Machakos and the village Trevor's living in. I am, as always, so appreciative of your perceptiveness and willingness to share. I wish us both lots of NED time to spend with our loved ones. Thanks. Ron

Peter Ogle said...

Hi Ron: If you get this follow-up to your comment, email me at I can tell you some more about what was said at the symposia vis-a-vis Yervoy and IL-2. The trip to Africa sounds terrific. Peter.

Lisa Hanley said...

I just stumbled onto your blog last night. Thank you very much for your wonderful and informative posts! I just found out yesterday that my sentinel lymph node biopsy showed melanoma in one of the 2 nodes that they took out. So now I'm trying to learn as much as I can in order to make the right choices. It's stressful, but I feel better after reading your insightful comments. I was also particularly pleased to see the nice things you wrote about Dr. Byrd and the Seattle Cancer Care Alliance. I was unlucky with my diagnosis, but very lucky that I live close to such a great facility. But thank you again. I am looking forward to reading more of your posts.

Peter Ogle said...

Lisa: You're fortunate to be hooked up with SCCA. I'm really sorry about the lymph node, but you have some good options. May God protect you and watch over your care. Blessings, Peter.