GlaxoSmithKline sponsored a Melanoma Blogger Symposium on Monday at their Navy Yard offices (which, if you haven’t seen, are pretty spectacular). Their goal, during Melanoma Awareness month, was to better understand how us blogger types communicate to our audience and, in turn, how GSK can better reach their patients. I think they got plenty of material to work with by bringing together five of us bloggers (six really, counting one couple), some melanoma advocacy organizations (read their blog post about the afternoon), plus a few people who dialed in.
Sitting with other cancer bloggers, it’s natural to get caught up in the comparisons – who has what tumors, how many treatments has she had, what stage is he, etc… This is especially true as we related our stories; they all came out slightly different. Our ups and downs were all similar, but each person had a different experience, and that made our views, and contributions, unique. GSK got no shortage of survivor tales and the difficulties faced on the road to where we are now, which they can use in their efforts to spread awareness.
My favorite part of the day was meeting some melanoma cohorts in person – only a few of us had crossed paths before, even though we are all friends through Facebook. While I felt like I “knew” a few people already from back and forth in our online melanoma forum, spending an entire afternoon and evening with the group made those relationships tangible.
Plus, it was fun introducing a bunch of Midwesterners to some of the more unique things in Philly. Like soft pretzels, which Anna at GSK picked up that morning at my request (she termed it a “demand”… to-ma-to, to-mat-o); or parking in South Philly; or my funny pronunciation of “water.” These are the things you don’t pick up on social media posts, and why becoming more than a screen name to each other meant something significant. This small online community enables us to share experiences in the safe haven of an invite-only group. We offer support and advice and our testimonials on treatments and side effects and the like. Now, we have a day together that solidified some of those bonds.
Outside of the personal contacts, it became pretty clear there were three very big things we share in both our journeys and our writings:
Prevention of melanoma is the biggest win possible. It affects the most people and lowers the risk of dying from melanoma to 0%. Pushing education of sun safety may seem fairly boring – who really likes PSA’s – but it is the best and most effective way to lower melanoma diagnosis and deaths.
- Early detection keeps a small problem from becoming a much bigger problem. This means self-exams, dermatologist visits, and knowing how to spot suspicious moles. The best thing I heard all day was from (I think) Rich, who said, “If you can make a semi-annual dentist appointment, then you can do the same with the dermatologist”. So when you make that call to your DDS, dial up your dermatologist too. It’s so simple; if you care enough to save a few teeth, I am guessing you would care enough to avoid cancer.
- Get patients into the best, right treatment; if you’ve unfortunately made it past the first two points, make the best of your melanoma diagnosis. Between us there were seven patients (two via Skype) and I am fairly certain we all had different treatment combinations. Some have the same treatments that are working (like Erin and I, who are a few doses apart on the same trial, with equally good responses) but I don’t think any of us have gone down the exact same path. We all had to find the “right” treatment for us. Interestingly enough, I don’t believe any of us happened to use GSK’s treatment options, which is a testament to them choosing this group based on our writings and not “brand loyalty”.
- Two more observations on the third point. First, we all have been treated at upper-echelon cancer centers – MD Anderson, Moffitt, Sloan-Kittering, etc… For each of us, finding the best treatment was a priority, and settling for standard care wan't an option. It was an important takeaway for other patients (and GSK) to know they have very good options, and should be confident the treatment they are getting is the best available.
Second, most of us have had multiple treatments. GSK spoke to us about genetic testing, and the future of cancer treatment becoming more personalized. There is not a silver bullet cure for everyone, at least now, and rather than continue to look for a one-size-fits-all solution, Pharma companies are evolving treatment options to be more individually-focused. This will one day (in theory) include specific treatment protocols and sequencing based on your genetic and tumor profiles.
Now, I'd like to encourage you to a look at some of the other blogs out there and see how they have dealt with the fight against their own cancer. Being a part of this group is one of those “when life gives you lemons, make lemonade” things that I am proud of. I am looking forward to sharing their journeys for many, many years to come.
Note to readers: GSK reimbursed my travel and expenses to attend the GSK Melanoma Summit, however, I was not asked to promote GSK or its medicines.
T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »