Navigating the World of a Clinical Drug Trial
[Editor's Note: Long-time concert photographer Andrew Youssef found out two years ago that he had stage IV colon cancer. In that time, he has continued to shoot tons of music events, on top of other freelance work and working a day job at a hospital, of all places. As he continues to fight for his life, this series allows him to tell his story in his own words.]
Lindsey Best Andrew Youssef
By Andrew Youssef
It has been two and half years since my initial diagnosis of Stage IV colon cancer. Sometimes it feels like a lifetime ago, other times not so much. During this time, I've been on a vast number of chemotherapy medications, looking for the miracle drug that would either cure or contain my cancer. My tumor levels have been all over the place, going as low as back to normal and as high as back to when I was initially diagnosed.
As I mentioned in prior columns, my cancer has continued to spread and now resides in my spine, kidneys, thyroid and lungs, as well as nearly fifty percent of my liver. My oncologist made the recommendation that I seek a clinical trial to find an investigational new drug that would have a different mechanism of action to eradicate my cancer. This is a scary proposition as chemotherapy inherently has a number of unique side effects that can be just as damaging as the cancer itself.
The other stark realization that hit me was that I'm running out of options that could save my life. How much longer can my body hang on with my cancer running unchecked throughout? Initially, I was going to get Cyberknife radiation therapy to eradicate my metastasis to the spine, but when I met with a new oncologist who has access to some investigational clinical trial chemotherapy medications, he warned me that it could keep me out of the study if I received radiation. Overall, It is more important for me to receive some form of systemic chemotherapy treatment and hope that it curtails the growth in my spine enough to get radiation later.
The study I was fortunate to enroll in involves a drug labeled as TAS-102. The positive aspect of this drug is it is in a pill form and doesn't involve me making numerous trips to the oncologist to get the medication intravenously. One of the more challenging aspects of the study is that in order to get the medication, you need to jump through a number of hoops. This particular study is looking to see how fast the drug metabolizes in the body. To achieve this information, I am sequestered to the hospital for nearly thirteen hours.
During this thirteen hours, a nurse will draw blood from me at ten specifically timed intervals to see how quickly my body is breaking down the medication. Throughout the day, I couldn't help sing to myself the Smashing Pumpkins song "Bullet with Butterfly Wings" in which Billy Corgan screams "Despite all my rage, I'm still just a rat in a cage." These are the hoops you must jump through in order to get the medication.
The other benefit is the medication doesn't cost me anything since it is a clinical trial but there is no escaping the fact that I'm a guinea pig, sacrificing my body in the name of science because who knows what long term side effects can occur, let alone whether it will even work against my cancer. Overall, I still feel fortunate that was able to enroll in the study and try something new. I will jump through whatever hoops I need to in order to beat this disease.