unless there was an amazingly promising trial. I wasn’t going to waste whatever valuable time I had left with my family traveling constantly for something that was highly unlikely to work. MSK is the leading cancer center in the country, and fortunately for me, it is only a thirty-five-minute subway ride away. Dr. V. had a last-minute cancellation just hours before I was to board a train for D.C. I took it.
Instinctively, I felt the need to obtain other opinions. Dr. A.C. was offering me Lonsurf and Stivarga, the last two drugs approved for colorectal cancer. Dr. V. identified those drugs, but she also offered me a spot in a clinical trial. It is a Phase II trial (meaning that the experimental drug has been tested for safety) involving a chemotherapy agent called SGI-110 that is administered in combination with irinotecan, a chemotherapy drug I’ve had lots of. Patients are randomized into two arms, one involving SGI-110 and irinotecan, and the other involving either Lonsurf or Stivarga (patient’s choice). Even if the patient is randomized into the latter arm, once Lonsurf or Stivarga fails, he or she is assigned to the other arm, so the patient receives the experimental drug sooner or later.
The next morning I saw Dr. M. Despite the unfamiliar environment, it was a relief to see him. He is such a kind man with a wonderful bedside manner, but he also knows what he’s talking about. He reassured me. First, he asked me how I was doing emotionally; he knew how I was inside by looking at the scans, but he wanted to know how I was doing in a deeper way. I told him that I was exhausted, that I was tired of making decisions, that I wanted someone I trusted to just tell me what to do.
Dr. M. understood my exhaustion. He took out a piece of paper and started writing down exactly what I should do: Caris genetic testing of my ovarian tumor from the surgery in May. Updated testing has a 10 percent chance of helping me determine future clinical trials. He would take care of it for me if I handled the paperwork, since he can ask for testing beyond the standard course. Lonsurf and Stivarga have a 40 percent effectiveness rate for an average of six months, with some patients experiencing quite a long tail. They both offer stability, not shrinkage. Stivarga, despite what the blogosphere and the Internet say, is not so horrible, especially when dosed appropriately—he starts at 120 milligrams. He administers Lonsurf with Avastin. No Avastin with Stivarga. Choosing between the two is just a question of what side effects I’m willing to tolerate more—nausea and fatigue versus hand-and-foot syndrome. He knows of the SGI-110 trial and thinks it’s “reasonable” for me to do, and I should allow the randomization gods to take one decision away from me.
As for how much time I have, he doesn’t know. I’m not in any immediate danger. He asked me if I’ve ever seen my scans. I told him I’ve always been afraid to look. He walked me through my scans to illustrate the point that I don’t have that much disease. We discussed where my disease was more dangerous, in the lungs or the peritoneum. In other words, Where will the disease actually kill me? I have always been afraid of peritoneal disease because my impression is that it grows so quickly. He said that if he had to choose, he would say peritoneal is more dangerous, not because of the rate of progression but because of the implications for quality of life. Peritoneal disease causes bowel blockages, which have a tremendous impact on quality of life (i.e., pain and the inability to eat and drink). However, at that point, artificial food administered through IV becomes an option. The disease in my lungs is still small, a centimeter here, a centimeter there. But once that disease grows large enough, my lungs will fail and I will die. There is no artificial means to get around failing lungs.
My meeting with Dr. M. was the best oncological appointment I have ever had. Speaking to him made me realize how I had been having misgivings about Dr. A.C. for a while, how he could never answer my questions or seemed to always defer my questions. Dr. A.C. was the kind of doctor with whom I could have a collaborative relationship, the kind of doctor I could text and email any time of day.