Mike Schmidt recently discussed dealing with Stage III melanoma with the world, which I suppose knocks me out of the “melanoma news” top spot in the Philly area for good. While I would never wish this on anyone, much less my favorite baseball player from childhood, a major local (and national) personality having a significant run-in with the real-life side of a disease like melanoma can only help raise awareness.
As a society, we react to things that hold large influence over us. Hollywood, sports, news, and political figures hold disproportionate sway in the court of public opinion. Too often, that means the latest reaction, or over-reaction, to something shared by the masses – both when a personality’s activism or opinions causes debate, or something they do gets captured and shared. Whether it is Gwyneth Paltrow talking silly about working mothers, Justin Bieber’s fighting the law down here in Miami, or Angelina Jolie’s controversial decision to have a double mastectomy after she discovered she had the BRCA-1 gene, their actions sparked great debate. The advent of social media has only made this spotlight shine brighter on a select few.
It’s not all Twitter trends and A-List celebrities making the public more informed, though. Go through an illness as a public figure, especially an active one, and the world becomes a little more in tune with medical issues that now have a face. Robin Roberts’ myelodysplastic syndrome diagnosis raised awareness of the disease, spiked bone marrow donations, and put the need for donors in the limelight. Maura Tierney’s missing out on a role in Parenthood due to breast cancer treatment, or Hugh Jackson’s brush with basal cell carcinoma, a form of skin cancer, are all recent examples of smaller but significant levels of public awareness being raised.
I met Melyssa at lunch at the CAM conference in March; her story was one I had to share. Her passion for overcoming cancer and doing it on her terms resonated with me. I always caution patients about believing in one treatment just because it worked for someone else, but this blog post isn’t just a testimonial about following a particular nutrition regime – it’s about owning your health, something she has done admirably.
Here is Melyssa's story, in her own words:
At some point during our lives, we have heard someone say (or have said these words ourselves), “My life is so boring. I need some adventure to liven things up a bit.” Speaking from experience, be VERY careful what you wish for! I uttered those exact words years ago, and on August 28, 2009, I got just what I asked for — and then some. I got a whole new life, and would spend the next five years praying my days would be less eventful, and that I could just have a “normal” life again.
“It's nice to know life still has small windows where everything is simple. You have your closest friends in life; the people who know the most embarrassing things you've ever done are still the same as 20 years ago, just a little older and fatter.” - Cuz
Last week saw two unrelated events pass that are both small footnotes in this story. Neither was medically remarkable or milestone-type accomplishments. They served as complementary reminders of the lousy conditions I have faced, and the health I aim to recover.
A year ago, I participated in a golf tournament benefitting A Prom To Remember, my first real “activity” following the surgeries and the initial clinical trial. It was most noted not for the lousy golf I played, nor the pair of NFL’ers that were my partners, but for being the first time the colostomy prolapsed out. If you haven’t been following along, prolapse means the last part of my large intestine was actually hanging outside my body, contained in the colostomy bag.
“Dude, why did you do it?”
That was my buddy Rob, on a rainy Saturday morning down here in Fort Lauderdale. I had just completed the Riverwalk Run – a Junior League fundraiser race down here. He thought I was nuts for even entering the run, and in retrospect, he was probably right. Pondering an answer, I quickly went through the checklist of what just happened in the last 66 minutes.
The Junior League holds an annual fundraiser run, with two adult distances and a 1k “Kids Run” that I was supposed to run with Josie at 8:15am. When I went online to register, though, my mouse added “Riverwalk Run 5 Miler” to the shopping cart – most certainly NOT a kid’s run. Jen was the Junior League’s volunteer chair, meaning she was in bed early Friday and out the door at 4am Saturday. I was up with Tommy from 1:15am until 2:45, and then back awake by 5:30 to pack a bag of stuff for the kids and me. Race time was 7am — my biggest accomplishment may have been getting us out of the house by 6:15.
Many of you know I serve on the board of directors for A Prom to Remember, a non-profit organization that gives the ultimate prom experience to kids with cancer in Fort Lauderdale, Cleveland, and, all new for 2014, Boston. So when I got an email about ConKerr Cancer’s PJ Party at the Please Touch Museum, it was time to impersonate an actual reporter and find out what the event, and organization, was all about.
First, the fun stuff – the party. Friday, March 21 (that’s tomorrow night, folks) from 6-9pm, ConKerr Cancer and the Please Touch Museum will hold a Pajama Party to benefit ConKerr Cancer. Children of all ages and their families, as well as anyone looking for a good time for a good cause, are welcomed. There’s only a few restrictions – guests pay a $25 donation, wear their PJ’s, and make the night a memorable evening for the many cancer kids in attendance! There will be a DJ, face painting, a photo booth and more in addition to all the entertainment the Please Touch Museum provides. It includes local eats and drinks of the kid variety – sorry fellas, but you can skip Happy Hour one Friday.
There will be some local star power, too: Flyers Alumni Bob Kelly and Todd Fedoruk and former Eagle Hollis Thomas, plus Channel 10’s Glenn “Hurricane” Schwartz. Several Miss American Teens will be attending, as will Eagles cheerleaders, their mascot Swoop and a few friends from the Philadelphia Zoo. It’s a great way to give your kids a fun night, have them meet some celebrities, and expose them to giving their time and money to benefit those facing a more difficult road.
I attended the Complementary and Alternative Medicine Conference last week in West Palm Beach and spent a day listening to keynote speakers present different ideas on battling cancer. I spoke with a number of current/former cancer patients, and got to browse through the different booths set up in the exhibit rooms. At the end of the day, I left with both more questions and more answers on what exactly is the role of complementary medicine in the fight against cancer.
Going in there, I didn’t really know WHAT to expect. The agenda contained a combination of mainstream doctors, integrative oncologists, and some “untraditional” presenters. Was this going to be like the button-down MRA medical conference, or a bunch of people wearing hemp and burning incense? Having somewhat explored the fringes of cancer treatments, I was familiar with many of the ideas, but didn’t know if this would tie theories and treatments together, or radicalize for alternative therapies and against Western medicine.
Turns out, there was a bit of everything. The atmosphere was much more relaxed, or less professional, depending on your viewpoint. Presentations were blurry or hard to follow; until the clicker was located, the first presenter was tugging his ear to communicate “go to the next slide”. One presenter was late and the time was filled with “questions” from the crowd that were really opinions with a “?” added at the end. There was a raffle drawing every hour or so; the food and drink served were organic and really catered to the attendees. The presentation, much like the content, was somewhat unorthodox.
Merck announced this week that it is expanding access for MK-3475 – the anti-PD-1 drug I have been taking for nearly a year. The drug, also known by its generic name of lambrolizumab, has already been granted Breakthrough Therapy status with the FDA, allowing the pharmaceutical company to work with the FDA to expedite approval of the drug. Now, a significantly greater population will be able to receive this treatment well before full approval is given.
It is part of Merck’s Expanded Access Program, which provides breakthrough medications to patients before regulatory approval and outside the traditional clinical trial setting. Many patients are getting shut out of clinical trials that could provide life-saving care; pre-conditions (like brain metastases) or eligibility criteria are not met, or spaces in the study filled up. Having a game-changing treatment like PD-1 sitting on the sideline, waiting for trials to complete and approvals to be granted, means that melanoma patients will die with the potential antidote sitting there, just out of reach. It is incredibly frustrating and ethically difficult to digest as a fellow patient; it must be impossible if you are one of the many who could not get this drug – or did not get it in time.
It’s a nice little perk for Merck to be the first to market in anti-PD-1, even if that means giving away the drug on a trial basis until it gets FDA approval. Bristol-Myers has a competing anti-PD-1 drug, and it’s assumed the first one to get approval will garner “market leader” status. MK-3475 has given a first quarter boost to Merck’s stock price, which makes Josie and Tommy happy; they own 15 shares of MRK (we’re backing our bet here at the Sharpe house).
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.