Meet Danny van Brenk, age 34 who lives with his wife and two children Floris (5) and Isabelle (2) in Heukelum, a small town in the Netherlands.
I was diagnosed February 2014 with intrahepatic cholangiocarcinoma. Doctors found tumors in 70% in my liver and I have lung metastases. I was told by the doctors in the Netherlands that there was no treatment left for me and I would only have a few more months to live. Clinical trials for cholangiocarcinoma weren’t available in the Netherlands at that time so we started searching for trials in Europe. We went to Belgium and Germany but there were no options for cholangiocarcinoma treatment, not even in a trial.
Via my Dutch surgeon I heard about a treatment in New York at Memorial Sloan Kettering Cancer Center. It’s called the HAI-Pump. The pump directly delivers chemo into the liver so the doctors can use a higher dose of chemo. In July 2014 I went to New York for a second opinion. A month later I had surgery there and stayed 4 days at the hospital. We stayed in New York with my wife and kids for three weeks.
Then every four weeks I flew to New York for FUDR chemo in the pump while also getting systemic chemo (twice a month) in the Netherlands.
After almost two years, the chemo I got in the pump didn’t work properly anymore. But treatment options were still very limited. The next step was genetic testing to see if I was eligible to participate in a clinical trial. I tested positive for the PD1/PD-L1 expression so with support from my doctor, I chose to participate in the Keytruda clinical trial as studies had already shown that some patients with cholangiocarcinoma had very good results.
The biggest obstacle was getting into the trial which started recruiting in the Netherlands this past April with room for only 18 patients. Although I had the required scan and blood tests, there wasn’t enough tissue from earlier biopsies. So I got a new biopsy. But this biopsy didn’t have enough vital cancer cells so another was needed. Last chance. And it was good! On June 1st, I started Keytruda after almost 2 months struggling to get into the trial.
I think that the biggest misconception about participation in a clinical trial is that a lot of people think clinical trials are a shot in the dark. So I have to explain it isn’t. That there are several phases in clinical trials. More and more patients are beginning to have gene testing. And that’s a good sign, because this could offer new trial options for patients.
If I could tell the world one thing about my experience with clinical trials, it would be that without the trial in New York I wouldn’t be here to celebrate life, to enjoy my wife and children every day, to see my kids growing up, to bring them to school. That’s the most precious gift to me on earth. Although we knew the trial in New York wouldn’t cure me, I’ve always kept the hope that I could ‘buy time’ and that science would go so fast that there would be another option for me in the future that wasn’t available at the time I started the trial in New York. And now I’m joining a trial with immunotherapy. Hopefully this gives me much more time with the ones I love.
Research and trials are so important. Special thanks to the Cholangiocarcinoma Foundation and their team. They do so many amazing things for cholangiocarcinoma patients, in many ways, also for patients outside the US like me. And I think it’s important especially for rare cancers like cholangiocarcinoma that we must work on this globally and share our knowledge. Keep up the good work and let’s go for that cure for cholangiocarcinoma!