Keith Taggart: Anticipating a Long, Healthy Life Thanks to Larotrectinib
Two years after being diagnosed with salivary gland cancer, I was told surgery could no longer keep the cancer at bay because it had spread throughout my body. I was offered a choice between chemotherapy, which might get me three or four more weeks of life, or a clinical trial testing a new targeted treatment. I chose the clinical trial. The treatment, larotrectinib (Vitrakvi), has been amazingly effective. My cancer has been undetectable for about 2 years, and I am planning on living a long, healthy life.
I was diagnosed with salivary gland cancer in October 2014. I had noticed a lump about the size of a pea in my cheek and my primary care physician had referred me to an oral surgeon to have it removed. Although the oral surgeon thought there was no cause for worry, a week later he called me back to his office and told me tests showed the lump was cancer. I was shocked and all I could hear during the conversation was “cancer.” It was only on the drive home that it started hitting me and I realized that I had questions. What would happen next? What treatments did I need? What would my future look like?
An appointment with a surgeon here in Oklahoma City reassured me. He recommended removing a wider margin of tissue around the spot where the tumor had been, followed by seven weeks of radiation. I thought, great, I’ll be fine once the surgery is done because all the cancer will be removed.
It didn’t work out like that. Before I finished the radiation, I noticed more lumps in my cheek.
I had more surgery to remove those tumors. But not long after, lumps appeared in my other cheek. Over the course of a year, I had four surgeries.
At this point, I turned to The University of Texas MD Anderson Cancer Center for treatment. Because I already had new tumors, they scheduled me for more surgery and another seven weeks of radiation.
Again, this did not control the cancer. As soon as I recovered from one surgery, more tumors would appear. In December 2016, after my most extensive surgery, I went on a cruise with my family to celebrate the holidays. Even though I was very sick by this point – I had lost a lot of weight, I was constantly lethargic and tired, and I had many aches and pains – I still didn’t realize the gravity of my situation.
After the cruise, things changed quickly. My surgeon told me the cancer was growing too fast for him to keep up and he was worried it might have spread to other parts of my body. CT scans revealed tumors in my lungs, liver, and kidney. I was devastated. Then, just two hours after learning – I was totally eat up with cancer,” as we say in Oklahoma, a medical oncologist told me that chemotherapy could get me three or four more weeks of life. It was the first time I had realized I might die and I started spiraling downward mentally and emotionally.
Fortunately, the medical oncologist had also noticed in my medical records that genomic testing of my tumor had revealed an NTRK gene fusion and she recalled receiving emails about a clinical trial underway at MD Anderson that was recruiting patients with cancers with these gene fusions. I jumped at the chance to participate. Within hours I had spoken to the clinical trial administrator and begun the process of enrolling.
After taking a single larotrectinib pill twice a day for just four days, the tumors in my neck, face, and chest had shrunk so much I could no longer feel them. After four weeks, CT scans showed that all except one of my tumors had gone. The one left had shrunk by 65 percent. Over time, it continued to shrink, and it has been undetectable for about 2 years.
I will keep taking larotrectinib as long as it keeps my cancer away. Right now, the quality of my life is extraordinary. I go to the gym and run two miles on the treadmill every day, and I haven’t missed a day’s work due to cancer-related illness since I started the clinical trial.
One of the reasons I choose to talk about my experience is that I want to spread the word about this wonderful drug and how genomic testing of my tumor played a vital role in getting me into the clinical trial that saved my life.