Our Cancer Companion support group at Dardenne Presbyterian Church is getting to watch an amazing story of a young Mom with a strong faith being led by God in her battle with stage 4 colorectal cancer. Her name is Elle and here is her story.
I was diagnosed with stage IV colorectal cancer at age 36 in April 2016. My only symptoms had been some (not much) dark red blood in stool and unusual-for-me constipation for about the previous 8 or 9 months. But since my youngest child Grant had just been born in January 2015, my primary doctor and I both thought it was probably just internal hemorrhoids. Once I realized it had been that long without the symptoms ever having subsided, I finally decided to take my doc up on her offer to go see a GI specialist. I forgot that my dad had had some precancerous polyps removed about 15 years before that, so I opted for the flex sig vs. the full colonoscopy. Thankfully the doctor still found the less than 2-inch tumor. A couple weeks later, scans revealed that the cancer had spread to my liver and both lungs.
I am so grateful now that my Siteman/WashU oncologist’s standard process is to have biomarker testing/molecular profiling done right off the bat for all his patients, even though the only thing it showed was a strong HER2 amplification. I underwent six rounds of FOLFOX + Avastin (until I made them discontinue the oxaliplatin to help avoid the neuropathy becoming permanent), then FOLFIRI + Avastin until February 2017. At my oncologist’s suggestion, we got a 2nd opinion at Memorial Sloan Kettering in New York. I saw the world-famous Dr. Nancy Kemeny. She apparently had one other HER2-positive patient who had mentioned it to her shortly before I did. She met with her colleagues about it and discovered the incredible clinical trial that I’m on today. She lined up my first appointment with the doctor orchestrating the trial—Dr. John Strickler at Duke—for the very next day after one of our appointments with her in July, and the rest is history.
Apparently, HER2-positive people notoriously see progression while on EGFR-inhibitor drugs like Vectibix and Erbitux. What I wouldn’t give to have been able to avoid that drug! I’ve heard people say that the rash it causes is a sign that it’s working. Well, that was unfortunately not the case for me. The rash was horrible, and I felt like a vampire because I had to avoid the sun (or just even being outdoors) like the plague. It affected me emotionally too, because I felt like a social recluse. I was on it for just shy of four months, and my skin didn’t fully recover until a good 3-4 months later. I still have some faint discoloration on my face from it.
But I won’t complain, because today I’m in full remission (technically not yet NED, or “no evidence of disease,” since some tiny spots are still showing up in the liver and lungs, although it’s possible that they just represent treated disease and are now nothing more than scar tissue), and the most amazing part is that I have absolute 100% quality of life on these drugs!!! The trial is called the MOUNTAINEER trial: clinicaltrials.gov/show/NCT03043313 And my CEA (tumor marker) has been at its absolute lowest since my initial diagnosis ever since I started the trial on August 8. It plummeted from 22 to 2.5 in just the first few weeks of the trial and continued to drop after that until it reached of plateau of a measly 0.5, which is where it remains as I’m writing this today. No one that doesn’t know my situation would ever suspect that I’m a stage IV-cancer patient! There is HOPE! Words simply cannot express how grateful I am for every single moment more that I am given on this earth, but the greatest blessing from all of it is that it has brought me closer to my heavenly Father. Praise be to God!!!