January is Clinical Trial Awareness Month. Today, we’re featuring a story from Gary Cole, our friend and a kidney cancer patient. He shares his experience with the RADVAX clinical trial, funded by KidneyCAN thanks to the support of our donors. You can donate here.
I’m a lucky guy. Sure, I have stage 4 kidney cancer but I’m lucky because I have a wife and family that love me, and I’m lucky that I have some of the best care for kidney cancer available in the world.
I was diagnosed in April 2016 after feeling a mass in my abdomen. My PCP saw me right away and I was sent for a CT scan the same day. He called later with the news that the large mass I felt was suspicious for renal cell carcinoma.
Didn’t see that coming.
I was referred to a urologist in Dallas, and a couple of weeks after diagnosis, he removed my right kidney. With scans every 90 days after surgery, it eventually became clear that the few small nodules in my lungs were slowly growing, and my urologist recommended I consult an oncologist. He referred me to a specialist but I was pretty sure we were not a good fit. I continued searching for advice and direction, and luckily my path soon became more clear. This is when I met Merlinda Chelette, a retired RN and one of the most informed and caring people I had met. She was also a stage 4 kidney cancer patient, but she selflessly volunteered as an advocate for other cancer patients at UT Southwestern in Dallas (UTSW).
With Merlinda’s guidance, I discovered the Kidney Cancer Center at UTSW and Dr. Hans Hammers. I already had read about a trial called RADVAX that was being offered at UTSW and I lobbied to participate, obviously for my own selfish reasons but also for the opportunity to benefit other patients with the research.
This trial, which was mostly funded with the grassroots efforts of Ralph and Brenda Knapp, provided an opportunity for a long term response. And I did have a good response with RADVAX, seeing more than 50% reduction in the size of my lung nodules at the first scan. Scans continued to show reduction or stability for over a year, though I had to leave the trial due to side effects.
Thanks to all of the good people involved, I continue to be free from systemic treatments two years later. I would not change a thing, and I feel very lucky to have been part of this clinical trial.
I encourage patients to discuss trial opportunities with their doctors so they also might take advantage of cutting edge treatments and help other patients in the process.
