Bill McCone: Surviving Head and Neck Cancer Thanks to Pembrolizumab

 
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Age: 54
Gilbertsville, Pennsylvania

In September 2014, I was told that my head and neck cancer had spread to my lungs and that with standard treatment I had about a year to live. I was also offered the opportunity to enroll in a clinical trial testing a drug called pembrolizumab (Keytruda). I took the opportunity, and after just 24 weeks, there was no evidence of cancer in my body. I was floored, but I’m living life to the full, camping, walking, and traveling with my wife.

My journey with cancer began about a week before Thanksgiving in 2013. I tipped my head back to shave one morning and noticed I had a small lump in my neck. I kept feeling it for several days so my wife told me to go and get it checked out.

My family doctor sent me to an ear, nose, and throat (ENT) specialist at the local hospital who ordered a CT scan and a biopsy. The tests showed that the lump was a lymph node in my neck that was enlarged because of squamous cell carcinoma, although they didn’t show the source of the cancer.

I was devastated. It felt as though my world had stopped and that everything else was just going on around me.

At that point, I wanted a second opinion at a specialized cancer center, so I went to Fox Chase Cancer Center in Philadelphia.

There they found that the primary cancer was in my left tonsil. Tests on a biopsy showed that the cancer was caused by HPV [human papillomavirus]. It was a total shock to me. I knew that my two daughters had received the HPV vaccine growing up, but my son had not. Right away, we got him vaccinated. I know that not everyone is having their children vaccinated, but I would strongly recommend vaccination over what I went through. I wouldn’t wish my experience on anyone.

My initial treatment was a six-week course of radiation. I also received weekly infusions of cetuximab (Erbitux). The cetuximab made me break out in itchy pimples, but the side effects of the radiotherapy were far worse. It caused blisters in my mouth and after about four treatments I couldn’t eat anything. I lost 25 pounds in weight, dropping below 170 pounds, and I needed to drink seven Boosts a day for three-and-a-half months to maintain enough weight so as not to need a feeding tube. It was grueling.

My first CT scan after the initial treatment was in June 2014. They told me there was a 6-millimeter spot in one of my lungs but that I shouldn’t worry about it because it could be anything. Three months later, the next CT scan showed that the spot had doubled in size and other spots were now visible.
The cancer had metastasized to my lung.

That was when the doctor told me that if I continued with standard treatment I had about a year to live. My wife and I looked at each other and our heads drooped. But a few minutes later, the doctor started talking about clinical trials. She told us that one of them was an immunotherapy trial and there were just two spots left. After thinking about it for a day, I enrolled.

My first infusion of pembrolizumab was in October 2014. I received it every three weeks for two years; I’ve been off it since September 2016. The only issue I’ve had was I developed hypothyroidism, but I take thyroid medication and it causes me no problems.

I had my first scan after starting pembrolizumab just before Christmas of 2014. It showed that the tumors had shrunk by 90 percent. I was amazed. Two scans later, there was no evidence of disease. Every scan since, including my last one in May 2017, has shown the same thing.

Hopefully, things stay this way and I can live my life. My wife and I have been going through a book called, 1000 Places to See Before You Die, which she gave me before my diagnosis. We’ve been on an Alaskan cruise, and visited Yellowstone National Park, the Calgary Stampede, and Nashville. We can’t wait for our next trip.

Maintaining funding for research is very important to me. The initial treatment I was on did not help me, but a new immunotherapy did. It is miraculous what it did, so let’s keep the funding going and get this thing knocked out of the way.


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