CRC Patient Stories: Elle and HER2
Elle Charnisky is a colorectal cancer advocate living with stage IV colorectal cancer who is passionate about sharing her experience to help others navigate their cancer journey. After receiving a HER2-positive diagnosis, she participated in the MOUNTAINEER clinical trial, gaining firsthand insight into the impact of biomarker-driven treatment and clinical research. Through advocacy and education, Elle works to raise awareness about the importance of biomarker testing and empowering patients to make informed decisions about their care.
Join Elle, along with Dr. John Strickler, for a free webinar, HER2 and Colorectal Cancer: What Advocates Need to Know, July 29, 2026 at 11am EDT. Register now.
I had always considered myself one of the healthiest people I knew. Apart from never being too big on exercise, I had always maintained a healthy weight and was a never-smoker and very light social drinker. And I had always prided myself on trying to eat healthy foods, at least as well as I knew how to.
I grew up in northeast Georgia but met my husband while in college at Purdue. We married in October 2007 and moved to O Fallon, Missouri, shortly afterwards. Our daughter Molly was born in August 2011, and then our son Grant was born in January 2015. When he was less than a year old, I started noticing some abnormal stuff when I went to the bathroom. I had recently started taking some cod liver oil supplements and thought maybe it was from those. But I contacted my primary doctor about it and also let her know that I’d been experiencing some constipation, which was unusual for me. She said I was welcome to go see a GI specialist at any time and that she would be happy to make the referral, but I first decided to just see her and see what suggestions she might have. She suggested some dietary changes, but when I went for my follow-up saying that the symptoms hadn’t resolved she wasn’t surprised since I hadn’t been able to implement the changes she’d recommended. So she sent me home with the same recommendations.
I was working in an office full time, and every now and then there would be dark red blood when I went to the bathroom. Then one time at home I felt the urge to push/strain prematurely. That was new. I went back and looked at how long ago I had first reached out to my doctor and realized that over eight months had passed since that time! So I decided it was time to take her up on her offer to be referred to a specialist.
I met with the specialist on a Tuesday. She asked if I had any family history of colorectal cancer, and I said no. (In hindsight now I know that my dad had actually told me about 15 years prior that he had had some precancerous polyps removed, but I didn’t recall that at the time.) So I just told her I had one aunt who had been diagnosed around age 40 with breast cancer, but that was it. For that reason we opted to have her do a flexible sigmoidoscopy vs a full colonoscopy. It was scheduled for the following Friday, April 8, 2016. I was 36 years old.
I went there not knowing I was going to be sedated and would need a ride home! So I had to call my husband to tell him that. When I woke up from the anesthesia, the specialist somberly told us she had found a tumor that looked like it had been there for “a long time.”
My husband’s sister was a former ER nurse and said we should go to Siteman Cancer Center. I scheduled an appointment with a colorectal surgeon there. He ordered scans to confirm what stage I was and then called me on April 22 to inform me that the cancer had spread to my liver and both lungs.
I didn’t want to do chemo. All I had ever heard were horror stories about it, and I had always smugly claimed that “I wouldn’t do it.” Thankfully my husband knew better, although convincing me was no easy task! But he wouldn’t let me give up so easily. I never could’ve done it without his loving support, and I largely credit him now with my life.
My oncologist at Siteman encouraged us to get a second opinion from Mayo Clinic, but we asked for a referral to Memorial Sloan Kettering instead because traveling to New York City sounded more appealing and seemed more feasible for us. There I met with the world-renowned Dr. Nancy Kemeny, and just when it seemed like our options were running out she asked me to come in and referred us to Dr. John Strickler at Duke, who was heading up the MOUNTAINEER clinical trial for colorectal cancer patients whose cancer exhibited a strong HER2 amplification. She said, “He’s the guy you need to see.” Back at Siteman, Dr. Benjamin Tan had ordered biomarker testing as he routinely did, and mine had shown that I was HER2-positive.
We had planned on heading back home to St. Louis the next day, but when we said that to Dr. Kemeny she said, “Oh good, then you can just fly [to North Carolina] instead!” And that is what we did.
I started the trial on August 8, 2017. My CEA (a number that serves as an indicator for some people, like myself) plummeted from 22 to 2.5 in just the first few weeks of the trial and continued to drop after that. And the most amazing part was that I felt like I wasn’t even on treatment at all. There were virtually zero side effects, aside from feeling a little tired the day after each infusion every three weeks.
I eventually had some recurrent activity near the site of the primary tumor in my colon. Dr. Strickler consulted with radiation oncologist Dr. Manisha Palta, and they together decided to advocate for surgery for me, because I was “so young and otherwise healthy.” Dr. Julie Thacker agreed to operate and performed LAR surgery in March 2020.
In January 2021, they noticed a small area in my liver that was becoming more pronounced with each scan, and Dr. Sabino Zani removed that in February. So I had two surgeries in less than a year (three if you count the ileostomy reversal, which was done on June 2020). I’ve also had a lung lobectomy in April 2024, but I’m thankful they were all laparoscopic and I’ve recovered well.
No one that doesn’t know my situation would ever suspect that I’m a stage IV-cancer patient! There is HOPE!!