Confessions of a Smuggler

Friends and Family,

I've written a lot about our trips to San Diego, but there is one part of it I've never shared. It's that I'm actually in two clinical trials. 

On our first trip down to San Diego, Dr. Hussein, a researcher, asked me if I would join a second study. This one was simple: All I needed to do was spare a little extra blood and urine. He was working in conjunction with other clinics to develop "liquid biopsies." 

The plan was to track cancer cells in blood and urine, with the goal of being able to identify when the cancer was dying off or growing. If successful, this could decrease the need for CT scans dramatically. So why wouldn't I want to help this effort? 

"There's more," Dr. Hussein said. Then, as part of his sales pitch, he showed me a CT scan of someone's lungs a week before starting AZD9291 (AKA Tagrisso), and a week after. The difference was remarkable. The amount that the cancer had shrunk within the first seven days was stunning. Now that I was properly motivated, he asked me if I could give him consecutive samples, so they could track the dying cells in my urine. Twenty-four days in a row. 

Sounds easy, right? Did I mention this was in San Diego? We were flying Spirit(less) Airline at the time, the airline that even charges extra for a middle seat in the back row if you so much as ask to choose your seat. You can bring a SMALL carry on bag, but even a medium bag brings a hefty penalty. So my first challenge was smuggling a case of 24 urine bottles onto the plane without getting hit for a baggage fee. I put my backpack on, and stayed facing the gate attendant until I was almost walking backwards to get on the plane, so the thickness of my backpack stayed hidden. Yes, I admit it. I'm a big, bad, urine bottle smuggler.

After that, all I had to do was collect a daily sample, and keep it in my refrigerator. For three and a half weeks, we made sure to grab anything needed out of the fridge, so our guests wouldn't open it and be tempted by the little bottles of apple juice. Or think something crazy, like that we were storing urine in our refrigerator. Then we had to ship it. I was pleased to find out that there is no law against shipping a case of urine by UPS or FedEx.

All this has now paid off. I am pleased to say that a liquid biopsy has recently been approved for testing for EGFR, and the approval for my mutation. The test for T790M has now been proven to be effective based on my trial, so approval should be coming along soon. So how will this be used?

This is the exciting part. Dr. Hussein told us that, so far from his experiences, the liquid biopsy has detected the growth of the cancer one to four months BEFORE it showed up enough to be visible on a CT scan. 

Once the full compliment of these tests is available, the possibilities get even more exciting. When someone is stable, they may be able to go off all meds, and not start again until the cancer starts growing. No pills means no side effects, which is fantastic. Also, with pills that cost $200-$300 each, this is no small savings.

Better yet, we won't have to wait six to twelve weeks before having a CT scan to see if a new med is working. We'll know almost in real time. As it is, if the med doesn't work, the cancer continues to grow. One or two unsuccessful treatment attempts in a row can be fatal, because the cancer has too much time to grow and metastasize before we know that treatment didn't work. There will be more room for multiple trials when the results come back before the cancer has grown much.   

We'll know which med to give without needing a new, invasive biopsy every time. This will also speed up research, since we'll get feedback on what is and isn't working much quicker. That means new and better meds will get on the market faster. I love where this is going! 

For all these reasons, I'm glad I made the sacrifice to become a big bad urine smuggler, and to keep all that apple juice in our fridge. And if you come over to visit, just know that our fridge has been scrubbed very, very carefully.