Last year, after seventeen months on Tarceva, I got the news. My lung cancer was off it's diet and was starting to get fat again. It was time to try a different treatment. But what was left? Seeing my doctor's scrunched-up face while he stared at the floor said it all: He had run out of hope that anything would work.
Chemo and Avastin had kept my cancer at bay before Tarceva, and together these three drugs had given me three extra years of life. But they had all eventually run their course. What was left? The cancer was in all lobes of my lungs and had spread to my bones, so radiation wasn't an option.
Luckily, I had a secret weapon in my arsenal. I read.
I found a blog by a person with remarkably similar circumstances to my own, including starting Tarceva at almost exactly the same time, and even including having radiation to our hips at about the same time. Craig and I became friends, and have been in close contact ever since.
It was difficult to watch when the Tarceva stopped working for Craig. Fortunately, his oncologist was on top of the research, and referred him to a clinical trial for AZD9291. This is a drug specifically targeted for people who are post-Tarceva, and whose EGFR mutation has further mutated to be T790 positive. The drug was wildly successful for Craig, but that is a story for him to tell.
The good news for me is that, three months after he started this drug, I was in need of a new treatment option, and knew about this drug that my own oncologist didn't even know was available through a clinical trial.
I got all the contact info from Craig, and immediately began efforts to get into this clinical trial. This was far more dramatic than I had hoped. The clinical trial was closing in one week, and the clinical trial coordinator was going on vacation at the end of the day that I found out. I had less than eight hours to get eight years of medical records faxed from two hospitals and two clinics if I was going to get into this trial!
Bureaucracy, people on vacations, other people not answering their phones, and the need for a sense of urgency that medical records people rarely encounter all added to the challenge. I spent the entire day working the phones and emailing people to light a fire under anyone and everyone who could assist in getting these records for me. At the end of the day, at 5:30, the clinical trial coordinator emailed to tell me that I had an appointment the following Tuesday for my interview to be admitted to the program. She hit the Send button on that email, and then started her vacation.
Just made it!
The part I haven't mentioned is that I live in Portland, and that the trial is a thousand miles from my home, in San Diego. My wife Genevieve and I flew to that first appointment, both excited and apprehensive about what I needed to do to be accepted. I had already made clear that I was ready to move to San Diego, do back flips, and turn into a Wookie if necessary to get into this trial. Was this interview about motivation? Nah. It turns out this appointment was mostly about paperwork... AND letting me know that they would need to run a few tests to determine if I was a fit for the program.
The "few tests" turned out to be a hefty amount of blood and urine samples, a series of EKG's, an echocardiogram, an eye exam, and a needle biopsy. The important one was the biopsy, which would determine whether I had the right genetic mutation. This involved getting me nice and groggy, getting onto a CT table, taking images, then inserting the needle as close to the tumor as they could get. Then they took another image, got a little closer to the tumor, and repeated until they got the needed biopsy. This involved a couple of sleepy hours and absolutely no pain.
An EKG sounds more like the jolt that brought Frankenstein to life than the passive monitoring that goes on. Sticky vinyl circles with metal tips, slightly larger than a quarter, were placed in 12 locations on my chest, arms and legs. Leads were attached, and my heart activity was monitored. The first time I did this, the protocol was to get readings once an hour, and then once every other hour, over a twelve-hour period, then come back the next morning for one last measurement, so they could get a 24-hour set of readings. The only pain involved was the removal of chest hair when the sticky circles were pulled off.
The echocardiogram is pretty simple. I laid on my side with my shirt off while a tech put some jelly on what looked like a microphone, and pressed it against my ribs while he looked at the images. The first time they did this I looked at the image, and asked the tech if it was a boy or a girl. He smirked. I guess he's heard that one before. I wore a hospital gown open in the front, and they gave me a blanket when I got a little cold. Twice I have fallen asleep while they were testing me. I plan to do it again. It's a nice quiet environment for a nap.
The eye exam is just like any other eye exam. It was probably time to get them checked again anyway.
Years ago I had a chemo port, and my doctor gave me "port cream" (lidocaine) to use before the needle poke. Since then, I have used that cream every time I have blood drawn. I put the cream on an hour before I'm going to get poked, and cover it with a 4-inch clear plastic bandage. I look away when they insert the needle. Often I can't even tell when the needle has gone in.
After initially getting accepted into the trial, I had to come back every three weeks for an appointment with the doctor, a new CT scan, blood and urine samples, and an EKG (only one each time). The schedule thinned to once every six weeks after the first six months. Every three months i have another nap/echocardiogram.
I've mentioned everything about this so far other than the treatment itself. Here is the treatment: I take a pill once a day. That's it. The side effects have been very minor. Dry skin and hair, occasional split skin around my fingernails, and a few mouth sores. This has been easier than Tarceva. That makes sense, because the cutting edge drugs are becoming better targeted with each new generation.
The results: That's the exciting part! In the first six weeks, my cancer shrunk by two-thirds! Since then, almost a year now, the cancer has remained stable!
I'm a big believer in clinical trials. After lung cancer treatment had remained pretty much unchanged for half a century, other than better management of side effects, the new treatments coming out are having spectacular results. Sometimes those results even end up with the words we all are waiting to hear: "No evidence of disease."
I plan on hanging around long enough to hear those words. Would I go into another clinical trial if/when this drug stops working?
Where do I sign up?