When I participated in a clinical trial the FIRST time I was diagnosed with cancer, it was so easy. My oncologist at the time, Dr. David Smith (Dr. Dave from this point forward) already knew me well. He had been my marathon training and running partner for a long time. We had spent many sweaty hours solving the world’s problems, curing cancer, and trying not to fall on the broken pavement, running in the dark morning hours. So when we were weighing options in his office, he merely said, “You’re going to get sick and lose your hair anyway. But participating in this trial may keep that from happening to people in the future.” I was in. All the paperwork was done, I got my own personal clinical trial nurse AND her cell phone number, and then the trial began. It was actually at Florida Hospital. No travel, no fuss, no muss. What was the big deal?
As with everything else this time around, everything is a big deal. Now I am starting to get why more people aren’t leaping right into clinical trials that could extend their lives and the lives of others. They can’t find them. Or they can’t decipher the information that, admittedly, is right there. Or they sit back and wait, thinking their medical team knows everything and everyone out there who can help. It’s overwhelming. If I were smart enough to be scared, I probably would be.
Even as I was digesting the fact that cancer dared return, I was getting phone calls and emails and texts and smoke signals from my very well-connected and brilliant friends. Why do so many people I know have contacts in pharma and cancer research institutes? I don’t know; it’s just one of my many blessings. They weren’t just contacting me; they were calling in favors directly from anyone they thought could help. Jackie says when her friend called over to Merck, the woman on the phone already knew my name. Dr. Shroff says a Genentech rep came in to her office wanting to know whose patient I was (of course, she couldn’t say.. the HIPAA-potomus rule and all). It was all kind of incredible… but no substitute for me doing my own work, diving into clinical trials.gov and seeing what was out there.
Last year at this time, my Huntsman oncologist, Dr. Akerley, basically told me that if the therapy we chose didn’t work, he had nothing else up his sleeve. In the last year, immunotherapy trials, targeted trials, even (horrors) chemo combination trials that are options are everywhere. On any given day, there are two pages of trials for drugs with all kinds of letters that all spell “Hope.” And just yesterday, Merck got fast-tracked FDA approval for its PD-1 therapy for advanced Melanoma. It’s (probably) not helpful directly to me right now, but that immense development IS going to be helpful to many, many people now and eventually. There is also a skyrocketing company called Foundation One Medicine. They get a genetic profile from a tissue sample and match it to drugs that would be most effective. Simplistic explanation, but revolutionary. ( I reconnected with a friend I haven’t talked to in a long time. Guess where she works now? My tests are being fast-tracked. Thanks, Maureen.) Cancer treatment is evolving geometrically. As Patrick said last year, it won’t be too long til we look back and are horrified at the barbaric treatments (hello, chemo) we put people through. I wrote down several of my own pages of notes.
Then, I get an email from a network news producer in New York. We don’t know each other. Several of her friends had seen and sheared my story (thanks, social media!) and told her she had to help me. She is a more than 10-year thymic cancer survivor. And like all great producers (I know more than a few), she went to work, systematically, effectively. All Labor Day weekend. She personally knows the Wizard of Oz of Thymic Cancer expertise at Indiana University, Pat Loehrer and called him. She found out about a trial at the NCI (National Cancer Institute) that might work out for me. She called that researcher’s office to make sure they’d be ready when I called later. (The clinical trial nurse eventually called me because other friends had tracked down the trial and had been calling and stopping in (Thanks, Steven).
No details about that situation from me yet. as I am somewhat superstitious. But I am also cautiously optimistic that we may be on to something. In the meantime, my friends at Growing Bolder and Livestrong have launched an amazing social media campaign (see right side of blog page, sidebar), helping me spread the word about the importance of clinical trials. I mean, if this quest for a trial has been circuitous and challenging for me, with all my well-connected friends who’d do anything to keep me around to make them laugh for a few more years, I can’t imagine how daunting it is for single mom who doesn’t have a computer in downtown DC. Livestrong does an incredible job helping folks with their Navigation Center. But the fact that the Center is so busy tells me there needs to be even more help. Anyway, this is all happening on the day that the tv show “Stand Up to Cancer” is airing, hoping to raise $100 million for cancer research. For research. That’s clinical trials. We are on the same mission. And Unity is Strength. I never forget where I learned that. Livestrong.