Hopefully you don’t get Melanoma, but if you do, now is the time to have it

Have you ever wanted to feel like the least-educated or least-intelligent person in the room? Go to a scientific conference, like I did last week for the Melanoma Research Alliance’s annual Scientific Retreat. Biology and chemistry zoomed by me in a flurry of industry terms: Heterozygosity? Intratumoral immunity?? Agonistic anti-CD-40 antibodies??? What the heck was did that just mean? At some point, I stopped taking notes; there were too many words to look up.

It’s not like dorky stuff is new for me; besides working in IT, I went to a school widely considered among the nerdiest and geekiest out there – CMU’s biggest football crowd was the game they passed out free floppy disks. For you kids, floppy disks look like the “Save” button and were the best way to keep data back in the Stone Ages, and your Facebook profile picture probably would be too big to fit on one. Unless, of course, it was double-sided, double-density. I digress… before I turn into my Dad.

So when I sat down amongst many of the brightest names in melanoma research and development, I figured I would be in over my head. What I didn’t realize was that the ceiling cathedraled so far up. The MRA brings together top-of-the-food-chain types from various academic, pharmaceutical, industrial, and governmental stakeholders in melanoma treatment — plus one fish-out-of-water dude with a laptop, a blog, and some receding tumors (there were a few other patients there, too, so I wasn’t entirely alone in this). They spoke a language I kinda-sorta barely understood; it’s like watching Telemundo after one year of high school Spanish.

I wrote about the MRA fundraiser at the end of last year; their model is to raise substantial capital, then grant that money out, with the premise that researchers share what they learn. This enables the pace of melanoma research to increase exponentially. The conference was the annual presentation of that research, much of it unpublished and/or preliminary findings. Part of what makes the event so unique is being an open, collaborative forum for doctors to discuss findings and their peers to weigh in with observation, suggestion, and some candid discussion. It is designed much differently from the public, published releases of studies most people are used to seeing, and enables the participants to speak without reservation. 

Keeping these discussions between the doctors and researchers doesn’t always make for the big splash a blog would want, but it is essential for giving a platform that removes inhibitions. In a brick-and-mortars analogy, this was the late night brainstorming session or water-cooler chats, where ideas and opinions are spun within peer groups. It becomes a safe place for the participants to collaborate off the record – the “trust tree” of the melanoma world, if you will. 

It was not limited to presentations, either. A good deal of time was spent in one-off conversations before, between, and after speakers, and meals encouraged even more discussion, except when line-dancing Thursday night. This openness was one shared experience I had with fellow attendees. Current and former patients discussed their melanoma trials with those whose research and development make the trials a reality. Mike Milken, former Senator Connie Mack, and Cokie Roberts all spoke how cancer has touched their lives and begat involvement in the MRA and the fight against the Big C. Having the full life-cycle of melanoma represented encouraged and energized the participants, even those of us who can’t tell you the difference between BRAF and NRAS.

Needless to say, you can cautiously look forward to more good news of melanoma research coming out in the near future. These guys and gals are insanely smart, dedicated, and driven to eradicate melanoma.

I spoke briefly with Debra Black – whose melanoma bout inspired the MRA – at the welcome reception.  Her words were ones I have repeated to many people and patients in the last 18 months. “Hopefully you don’t get Melanoma, but if you do, now is the time to have it.” Those of us whose lives are being saved by these melanoma researchers couldn’t agree more.

T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »