My name is Kris and my journey began in Feb. 2011 when my back started hurting. The band of pain from my back to my chest was excruciating. I was vomiting from the pain. It eventually lessened a bit. I didn’t want to go to the hospital. On Monday, I went to see my Dr. and was sent for an ultrasound. It was just gallstones. Wrong! After a CT scan we knew there was a mass in my liver. Lots of tests, two oncologists (my 1st new word) later, and a biopsy led to hearing my 2nd new word… CHOLANGIOCARCINOMA. I looked up that word and got really scared. In 2011 the chances were about 7% that I would live two years. It was one of the worst nights of my life. I was 47, had a pretty serious boyfriend, was the happiest I had been in 3 years, and I had a death sentence. And within a month I was laid off from my job and my career.
I went MSKCC in NY. The surgeon said I was inoperable. The tumor was wrapped around my vena cava and had compromised 2 of the 3 hepatic arteries. He suggested a hepatic liver infusion pump with Gem/Ox and FUDR. My parents flew in from AL to take care of their “little girl” and things moved forward. I went home to begin my “new normal”. After 3 embolizations and a few months, the FUDR became too toxic, so it was discontinued. After a short break, I began Gem/Ox again. It proved to be the last time because of the neuropathy in my hands and feet.
My surgeon and I discussed a possible resection. My next scan showed progression. I was devastated. I started Xeloda with Gem and had a portal vein embolization to grow the right side of my liver to prepare for surgery. Then I got the news that the progression had gone too far and the resection was cancelled. Again, I was devastated. My boyfriend decided he was too overwhelmed and disappeared. I thought it would just be easier if I died. I was going to anyway. My surgeon said I was much sicker than I appeared. He suggested trying radiation and “putting my affairs in order.”
So here I was. 1 year into my journey. No family within 1000 miles. A missing boyfriend, No career, and my mortality looming. To take my mind off of my horrible life, I began playing Texas Hold ‘em. And I decided to overcome one big fear. I got up to sing karaoke. I loved it! I became a karaoke junkie! My 50th birthday was looming. I had been told I wouldn’t live to see it, yet it was just around the corner.
In July 2012, I started SBRT radiation at Fox Chase Cancer Center. It worked for 9 months. Then I heard about a promising clinical trial. I left MSKCC for a great onc at Fox Chase. I was one of the first patients to participate in this trial, starting April 2013. The drug is now called MERESTINIB. And it was 3 pills a day! No infusions! No serious side effects, no major issues, just the word stability over and over. I became a patient with a “chronic illness”. I forgot about being a cancer patient. I started embracing LIFE! Okay, so the dating hasn’t panned out well… still haven’t found that guy to share my LIFE with. But I keep looking. I’ve got a life to live!
In December 2015 I had to leave the trial as there was disease progression. I couldn’t believe I had to go through this AGAIN. After having genetic testing, the doctor and I discussed Keytruda and Opdivo. By then, itching began and my urine was dark, so I knew what was coming… I needed a biliary stent. After 5 years of bile duct cancer, I finally had cancer in my bile ducts. Ironic. 2 months and 3 hospital stays later, I’m feeling better.
In April 2016, I began a new trial at a new hospital. The trial is called ARQ 087. It targets the fgfr2-fusion mutation. It is also 3 pills a day. My first scan showed shrinkage!
In the 5+ years I’ve been on this journey, I spent the beginning of it waiting to die before I realized that I was wasting what time I had left. So I decided to LIVE. Have I had tough times? Do I get depressed? Of course. But now I think of my life in terms of the Miley Cyrus song “The Climb”. She says “There’s always gonna be another mountain. I’m always gonna want to make it move. Always gonna be an uphill battle. Sometimes I’m gonna have to lose. And I, I got to be strong. Just keep pushing on”. This has become so much more than a song to me. It keeps me going when I feel like I’m drowning. And in the words of my new Dr. “I look FABULOUS!” I’m also still 50 (for the 4th time). I refuse to grow any older! It’s become kind of a joke.
Clinical trials are so important because they help researchers find better ways to beat cancer. Without clinical trials I believe I would not be here. And on a good note, clinical trials often have lesser side effects than “approved” chemotherapies. I’m now on my 2nd trial and, if need be, will do a 3rd, a 4th and a 5th trial.