by Chris Brewer
Right up front: I was diagnosed in January 2007 with rectal cancer. I was 39, training for a half marathon and had no family history of disease. In fact, I even asked in the exams leading up, “Was cancer a possibility?” and the response was always a firm “No.”
It all started with some occasional bleeding, but the biggest symptom was just enormous fatigue. I’d told my gynecologist about it who then sent me to a gastro specialist. He suspected an inflammatory bowel disease kind of thing and recommended a colonoscopy. That procedure and a couple days later, I’m in front of another doctor expecting a course of steroids for essentially an irritable bowel, but instead he looks at me very seriously and says I have a very enlarged polyp and if it wasn’t cancer, he’d be very surprised. Then he starts talking about chemo, radiation, surgery, then more chemo and radiation. To say my head was spinning was a huge understatement!
The very first thing I did when I got home was to go online at LIVESTRONG.org. I needed to know a lot more about my situation from a trusted resource as I had some very big decisions to make in a very short period of time. I’d read Lance’s first book before and wondered how he got through making all those decisions back in 1996 without having any real, credible secondary information. LIVESTRONG.org and the staff gave me reliable links and information as to proper treatment processes, as well as same-situation cancer survivor stories. These allowed me to put things in context and be able to make sound decisions for myself.
After the initial treatments, I had a recurrence in my lungs and pelvis just shy of a year from diagnosis, and that meant some big surgery and more chemo. I’m not a large person and don’t tolerate chemo very well, so that meant that there were times when they just couldn’t give me enough medication to have the impact they wanted. Unfortunately, that lead to a multi-site recurrence not long ago, so much so that surgery wasn’t even an option. More chemo seemed to stem the tide, but we weren’t seeing any reduction either, and over time, the disease started to progress again.
We tried a new drug but the side effects were so horrible I just couldn’t take it, and since we were essentially out of “normal” options, a clinical trial seemed to be my best hope. Once again, LIVESTRONG was there for me. I went to the website and filled out the clinical trials questionnaire and was happy to see I actually had quite a lot of trials to choose from; soon after, I got a phone call from one of the counselors at LIVESTRONG’s partner Emerging Med. She sent me information on 50 different trials, all organized in various manners, and was also there to help me navigate through the decision process.
I was really interested in immunotherapy (i.e. the use of the immune system to reject cancer), as was my doctor at Stanford. There was a Phase 2 trial at NIH using this process that has had some solid success treating Stage 4 melanoma patients and it sounded like a good fit for me. Again, Emerging Med really helped out in the application process as I felt like I was preparing for my most important job interview ever! I just don’t know what I would have done without their advice, because at the end of the day, there were only 36 slots open versus the entire population of the colorectal cancer community. Their help was invaluable, as was their advice to be the proverbial “squeaky wheel” and keep communication high as things rolled on.
I’m very happy to say that I was selected to be in the trial, and one important thing to note is that they pay for the process too. Things got started fast as there’s no need for second opinions and insurance clearances etc. (I have to add that one of the weird things about the trial was they needed “enough” cancer cells to target, so part of the process was growing my cancer so that there was at least one tumor larger than 2cm – I was, in effect, a cancer farmer and for the first time in my journey literally had to hope my disease would get bigger!)
*** I think it’s also really important to talk about the quality of care I received at NIH during the clinical trial. From the doctors to the nurses and support staff, everyone was just nails. They are experts in their fields, of course, but they also treated me like a person too. As LIVESTRONG looks to develop what “patient-centered care” means, NIH has got a great start, and by that I mean that even though they’re clearly doing research, I didn’t feel that – I was important. They knew my history, they knew the complications I’ve had, they knew what we were doing and why, and it was all rolled up into my total care.
The big lesson I take from this experience is this: I could not have done this by myself. I consider myself a very well-informed patient, but it still took a team effort to get the quality of care I have had since that first diagnosis. And as I had to start considering a clinical trial, the coordinator at Emerging Med made all the difference in the world. I ended up exactly where I wanted to be, but I also know that without the help I’ve received from LIVESTRONG and their partners, I would not be where I am today.
Follow up: Brienne received 68 BILLION tumor infiltrating lymphocytes in her clinical trial. Her latest update is: “…the early returns are that things look good. My two largest tumors are shrinking, one significantly. It’s too soon to say that’s the (TIL) ‘ninjas’ at work as I was also treated with chemo – but it’s chemo that generally isn’t used for colorectal cancer – and for all the chemo I’ve had the best result has just been stability. We are feeling very optimistic!”