My Life As A Guinea Pig

On a sunny San Diego afternoon in the winter of 1996, I was jogging on the beach near my home when I reached up to scratch my neck and discovered a walnut-size lump. Ignoring it for a few weeks, I finally decided a few days before Christmas to have an ear, nose and throat doctor check it out. Really, the visit was just to appease family and friends, because I knew it was nothing. I was wrong. By New Year's Day, the ENT doc had transferred me down the hall to an oncologist, who gave me the unthinkable diagnosis: an advanced case of low-grade, non-Hodgkin's lymphoma, a treatable yet incurable cancer.

As a nonsmoking, athletic and, until then, almost impossibly healthy 35-year-old, I couldn't believe I had cancer. Sometimes I still can't. It's the kind of thing that happens only to other people. But believe it or not, I'm still smiling, still working, still enjoying life. I am a cancer survivor--largely thanks to a clinical trial.

My oncologist insisted my only option was a chemotherapy regimen called CHOP, which stands for something I don't care to recall. I went through five brutal rounds of it in 1997. The chemo did put me in remission, but it just about killed me. So when the cancer recurred in 1999, I enrolled in a clinical trial of a new drug at the Hoag Cancer Center in Newport Beach, Calif.

Called Bexxar, the drug is a monoclonal antibody vaccine that contains a radioisotope. The antibody homes in on tumor cells, and the isotope kills them with radiation; normal tissue is apparently spared. The trial was paid for by the biotech company, so I didn't have to worry about insurance. The folks at Hoag sent me tons of paperwork, most of which I tossed into the trash. My oncologist encouraged me to read every page, but I had neither the time nor the inclination to read volumes of material. I just wanted to get well. All I really cared to know was the drug's potential side effects and how effective it had been in earlier trials. For those answers, I contacted the researchers directly. They all assured me the risks were minimal. Through Internet chat rooms and newspaper and magazine searches, I tracked down other people who had gone through this trial, and virtually every one encouraged me to do it.

I was nervous. The trial involved full-body scans and blood tests. But the people at Hoag were very nice, and as everyone had promised, there were virtually no side effects. I was back at the beach running within weeks. Bexxar has put me into remission again.

Here's the rub: I found out about the Bexxar trial myself. I didn't rely on my doctors, and neither should you. Unfortunately, when you learn you have a life-threatening disease, you're often too sick and/or scared to do much research. So you take your doctor's word. That's what I did. Big mistake. My first oncologist, at a renowned cancer hospital, never shared one bit of information about the lymphoma research I've since learned is going on. Through tears I asked him if there were any other options besides chemotherapy, and he flatly said "no." While clinical trials are risky, you may be taking a greater risk by not considering one. At the National Institutes of Health's clinicaltrials.gov, I learned that 18 of 20 patients vaccinated against non-Hodgkin's lymphoma remain in remission an average of four years. If I had known about this vaccine, or about the effectiveness of monoclonal antibodies, I would have considered one or both. I'm keeping my eyes and ears open for new trials.