I’m a Guinea Pig

I had a meeting with my oncologist today when I went in for my regular Herceptin treatment. I wanted to know why I didn’t have any of the usual symptoms of chemo that everyone else had -- nausea, vomiting, fatigue, neuropathy, and so on. And why one of the chemo drugs I got wasn’t even listed in the American Cancer Society’s book on breast cancer, which was published in 2004. And why I hadn’t come across anyone, either in person or on the Internet, who’s had the same chemo drug combo that I’ve had.

Apparently, my protocol (drug mix) isn’t really used in the U.S. It’s more common in Europe. One drug, Herceptin is so new, that it only became available in Australia in May this year. And in the U.S., it’s only available for late stage breast cancer (the desperate cases), and early stagers have to apply for clinical trial. There’s no five-year survival rate data on my protocol because this drug mix hasn’t been used long enough.

In other words, I’m a guinea pig. That means, for good or bad, all those statistics on survival rates for my cancer don’t really apply to me. After the five-year clinical trial period for my chemo protocol is up in the coming year, data will start to come out on survival rates, and then we’ll have a better idea of how long my life expectancy is. But again, that’ll just be averages of past cases, not necessarily my own particular case. But at least that’ll give me some idea of how other patients on my drugs have fared.

My doctor said there’s an oncologists’ meeting in March in Amsterdam, where some of the initial data should be released. I’m thinking of going to Amsterdam. Apparently, these meetings aren’t restricted to medical professionals. Anyone can go if he pays the conference fee, so why not? If we have any money left in the bank after my treatment is over, I might just go and call it a business trip. After all, saving my life is my business. Too bad I can’t expense it.