Melanoma survivor: Why I joined an immunotherapy clinical trial

I’m originally from Maine, but I’ve known for a long time that MD Anderson is the gold standard of cancer care. So, when I was diagnosed with melanoma in January 2016, that’s exactly where I wanted to be.

I ended up having three surgeries and joining an immunotherapy clinical trial there. And while I can’t ever be certain if it was the surgery or the immunotherapy that has kept me healthy and cancer-free, I am thankful.

The drug I received through the clinical trial, pembrolizumab, was experimental at the time, but it has since become a standard of care for treating melanoma. So, a lot more people have access to it now. It feels really good to have been a part of that.

My melanoma diagnosis

I learned I had cancer after noticing a strange freckle on my forehead. It didn’t have irregular borders or any of the other qualities that dermatologists tell you to look for. But something about it wasn’t quite right.

I grew up in the 1970s, when people weren’t particularly concerned about sun damage. So, I knew I’d gotten a lot of exposure at a young age. That will put me at higher risk of developing skin cancer, especially since I’m pretty fair-skinned. I’d already been diagnosed with basal cell carcinoma twice since my late 20s.

I called my dermatologist about the freckle. She insisted I come in so she could take a look. I’m really glad she did. It turned out to be melanoma.

My melanoma treatment

At the time of my diagnosis, my husband and I had been living in Louisiana for about three years. But years earlier, we lived in Houston. So, we’d already been getting all of our routine cancer screenings done at MD Anderson for some time. We knew that is where we wanted to be for my treatment. We got an appointment there and made the five-hour drive from Mandeville.

At MD Anderson, we met with head and neck surgeon Dr. Randal Weber. First, he ordered new tests and scans to confirm my diagnosis. After reviewing the results, he told me my cancer still appeared to be at a very early stage and a surgery would likely be the only treatment needed. I had surgery to remove the spot on my forehead in February 2016, and had reconstructive surgery shortly after.

Why I chose an immunotherapy clinical trial after a melanoma recurrence

Unfortunately, about nine months later, a swollen lymph node popped up along the side of my neck. It was right beneath my jawline. Because Dr. Weber’s team had advised me to watch for this, I notified them and came back to MD Anderson for testing right away. The results showed it was melanoma. The cancer had metastasized.

This time, Dr. Weber recommended a neck dissection — or the removal of multiple lymph nodes from that area — to determine how much the cancer had spread. I had that procedure done in November 2016.

Only the one swollen lymph node in my neck tested positive for cancer of the 20 or so Dr. Weber removed. But I didn’t feel super confident that that was going to be the end of it. Neither did he.  

So, when Dr. Weber recommended an immunotherapy clinical trial, I was willing. I didn’t want to go through this experience again.

How I responded to immunotherapy

Dr. Weber referred me to Dr. Michael Davies, who offered me the opportunity to participate in a clinical trial comparing the effectiveness of ipilumumab to pembrolizumab in patients with stage III melanoma. I joined the clinical trial in February 2017 and was randomly assigned to the pembrolizumab arm. I started receiving infusions every three weeks. My last one was in February 2018.

I was a nervous at first about how my body would react, but the side effects turned out to be pretty mild. My stomach got a little upset after each infusion and I had a rumbly digestive system, but it wasn’t anything problematic. I was grateful to have this second line of defense against melanoma.

In fact, I felt so good, that the weekend after my last immunotherapy infusion, I went on a 3-day camping trip with my family to celebrate in the Grand Canyon. It was the dead of winter, and we hiked down and back up on foot, carrying all our own food, water and shelter, but I still did great.

My life after melanoma

Today, the only lingering side effect I have is a little stiffness on the left side of my neck due to some scar tissue. I deal with it using yoga stretches and herbal wraps. But if that’s the extent of my cancer treatment side effects, I am totally OK with it.

Looking back, I’m incredibly grateful I joined a clinical trial at MD Anderson. I trusted Dr. Weber implicitly. So, when he suggested I consider an immunotherapy trial, I had no misgivings. It seemed like the best path forward to regain my health.

Nearly three years after my final immunotherapy infusion, I am still cancer-free. So, whenever anyone asks me what I think about clinical trials, I say that if you qualify to participate and they seem right for you, they are definitely worth it.

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