My name is Caroline. I am 28 years old and I was diagnosed with stage 3C melanoma in August 2013. This is my story:
At the time I was diagnosed, I was living in Hong Kong working at an outdoor education center. I include this detail because it’s important to me that people understand I was not a sunbather or a tanning bed enthusiast. My professional background is outdoor adventure leadership, and I have spent the last 7 summers guiding canoe trips, hiking and rock climbing. I have never used a tanning bed, and I always applied sunscreen.
One day, I noticed a golf ball sized lump on the side of my neck. I decided to get it examined by a doctor in Hong Kong who immediately did a biopsy, and in just 24 hours I had my diagnosis: Stage 3 amelanomic melanoma. I received this news on my own, in a major foreign city, by a doctor I had only met once. Alone doesn’t begin to describe how I felt. Panic set in and the first words out of my mouth were, “Will I be okay? I don’t want to die. Can you call my parents for me please?”
I was so fortunate to have my parents. They were on the next flight to Hong Kong. For the next week we ran around collecting my tissue samples to take back home with us, having PET scans, and trying our best to appear strong for one another. None of us knew what to do, how to react, or even how to make sense of this situation, but we did our best. I’m a trained survivalist, but all of my training could not prepare me for the journey that awaited me in Toronto.
I flew back home (Toronto) with my parents 5 days after my diagnosis. It was then that I was introduced to the people who would go on to save my life, my oncologist and surgeon at Princess Margaret. My first CT scan showed 5 tumours on the left side of my neck, but they had trouble locating my primary tumour. That’s when I remembered that I had a mole removed 5 years ago from my back, but I assured the doctor that at the time I was told it was benign.
It was then that I learned the importance of having an excellent oncologist. Unconvinced, by my statement that it was benign, he placed an order for it to be re-examined. It was then that we learned that the 2008 pathology report was a misdiagnosis and that the mole was actually malignant.
On September 20, 2013 I had a radical neck dissection. My super star ENT surgeon removed 63 lymph nodes and out of those 63, 11 were cancerous. It took me 2 months to recover from the surgery, but I did not have the luxury of time because I had to undergo 33 treatments of radiation to help prevent the spread of my disease. Thanks to the quick actions of my doctors, I found out just before Christmas (2013) that I had no evidence of disease. My family and I were excited, but my doctors were quick to remind me that I was not out of the woods yet.
On May 23, 2014, during one of my regular CT scans, they found 2 spots in my lungs. To confirm that these spots were melanoma, I had another scan in late July, which revealed that the spots had grown – a good indication that these spots were melanoma.
August 14th 2014, I underwent a wedge resection to remove one of the spots on my lungs. The biopsy confirmed what we had long suspected: my melanoma had metastasized. Worst yet, not only had the melanoma spread to my lungs, but following the surgery it was found in my liver and at the base of my skull – I also had a blood clot in my liver that I had to contend with.
Now that I had a non-resectable, late stage melanoma (NRAS mutation), I had four treatment options presented to me. I entrusted my life to my oncologist and followed his recommendation to apply for a trial drug called MEK162. Uncertainty is the word I would use to describe this next section of my journey. I never thought I would have to apply to be on potentially life prolonging drugs, or that I would be entered in a lottery type system to determine if I would receive that drug or another less effective treatment, so waiting to find out if I was accepted was incredibly hard on both my family and I. Thankfully, I was accepted into the trial and was randomly selected to receive the MEK162.
After the initial excitement, I learned very quickly my second round had not really even started yet. After about two weeks on the MEK162 the side effects started to kick my butt. I got this awful acne rash all over my face, chest and back that hurt worse than my radiation burn, my joints were sore, hair on my head was coming out in clumps, and my nose would bleed sometimes two to three times a day- the longest nosebleed lasted 13 hours. The rash was so bad my doctor took me off the drug to give me a break. In the meantime, I saw a dermatologist to start me on Acutaine to try to manage the MEK side effects. A week later I started the MEK again. BUT my CT scan showed great results. My tumours had shrunk by almost 30%, and I was only on the drug for 3 weeks!
I was on the MEK for approximately 6 months. Like many inhibitors, your body develops a resistance. Once my cancer stopped shrinking, I moved off the MEK and started Ipiluminab. I did 4 rounds of ipi, and the worst side effect was the itching. It was manageable with hydrocortisone cream and Benedryl.
On June 13, 2015, I married my husband, Justin. We are only 28, but we have experienced more hardship in this last year than most couples our age. Unlike me, he had a choice to go through all this cancer stuff, and he chose to stay with me, even if that meant not getting the chance to have kids, or the possibility that he may have to care for me if I were to get sick. As low as the low points can get, the highs can be indescribably high…like the moment I’m about to share with you.
On June 17th, 2015, I had a CT scan that showed I am responding to the Ipiluminab. The 4 tumours in my lungs are gone, and the ones in my liver are so small they are almost undetectable. I am stable, I am strong, and most importantly, I can start to imagine a future with the people I love. I feel unbelievably fortunate to now have the time to not only reinvent myself, but also to be repay the support of all of those who have provided me with enduring motivation, understanding, love, and kindness.