Decision Time for My Treatment

Friends and Family,

If you could get the same life-saving medication without being in a clinical trial, would you quit the trial? That’s what I have to decide.

Two weeks ago, I got some spectacular news. My clinical trial drug, got FDA approved! World, meet Tagrisso, The Drug Formerly Known as AZD9291. For me, getting this news felt like a holiday! Thousands of people will now live longer. I am awestruck! It’s a crapshoot whether I would still be alive today, almost fourteen months later, if I had not gotten into this clinical trial. That makes the lives of those thousands of people much more personal to me. Woohoo!

Now here’s the dilemma: The approval of this drug means I have options. Ashley, the AZD9291 Clinical Trial Coordinator, called me. Since I now have a choice and could get my medication in Portland, she asked me if I planned to remain in the clinical trial. I got the feeling she was expecting me to say, “nice knowing you,” and never look back. But the decision isn’t so easy.

There are good parts and not-so-good about remaining in this clinical trial. On the not-so-good side, there is the time and expense of flying 1,000 miles to San Diego every six weeks. It also means getting CT scans twice as often, which means twice as much radiation, which means increased risk of… getting other cancers! Two medical professionals I asked denied being experts in this area, but estimated that CT scans have 100 to 250 times as much radiation as an X-ray. I don’t even know how to fathom what this means about my risk of getting other cancers.

But there are good parts about remaining in the clinical trial. To begin with, I literally owe my life to this drug, and I believe that gathering more research data is important. Since there are only 411 people in the world who have been in the trial, that’s a small number for research purposes. The irony is hard to beat: By remaining in a study to increase the safety for the people that follow me, I increase my own risk of getting another cancer.

There is also the HOPE factor. People who start this drug need success stories. For example, I started on Tarceva shortly after it was approved. My oncologist told me the stats on how long the drug was usually effective, but he also pointed out that there were people that had been in the clinical trial for many years. That gave me more hope. I told myself that I could be “that guy” who stayed on the drug for years. Now, I could be “that guy” for others that follow me on Tagrisso. But only if I remain in the study.

The other reason to remain in the study is that UCSD has an amazing team of oncologists who specialize in lung cancer, and specifically Dr. Sandip Patel. While many oncologists treat lung cancer, the knowledge of other clinical trials and cutting edge treatments that you get from a specialty team is incredible. By remaining in the clinical trial, I remain in contact with Dr. Patel, who can guide me when I need a new treatment.

So, my friends, what would you do? Are there other factors I haven’t considered?