Adam Capezzuto Patient Story

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In August 2014, I felt a lump under my arm while I was showering. I had an upcoming appointment with my endocrinologist, so I asked her about it. She wrote a prescription for an ultrasound. I work in the medical field, so I knew something was wrong when the ultrasound technician called in the radiologist instead of sending me home after the test. He performed a second ultrasound and told me he wanted to do a biopsy.  The results showed a malignant neoplasm, but the report couldn’t pinpoint what it was so he sent the samples to an oncologist. On my 33rd birthday, I was diagnosed with poorly differentiated melanoma.

The oncologist referred me to several cancer centers, one being a well-known center within driving distance of my home. 
Several doctors there reviewed my case and came back with several different treatment plans.  I wasn't comfortable with any of the plans, so I reached out to another melanoma specialist also suggested by my oncologist.  I clicked with him immediately and embarked on my treatment journey.

Because the melanoma was poorly differentiated, we decided to remove only the tumor for more study, leaving the lymph nodes intact. My oncologist also suggested a clinical trial, but that scared me. I didn’t want to be a guinea pig. While I was considering it, I was shopping with my mom when we ran into her oncologist (my mom is a breast cancer survivor). She told me to absolutely do the clinical trial because it would give me access to the most leading-edge treatment available. That was all I needed to hear.

To complicate matters, I was set to be married on October 25.  After discussions with my surgeons, we agreed to wait until after the wedding to remove the tumor, if we postponed the honeymoon. After the tumor was removed and tested, it was confirmed as Stage III melanoma.  This led to a follow-up surgery in early February to remove the lymph nodes in the area, and all of the lymph nodes came back clear.Adam_Capezzuto.jpg

After the surgery in February, I let my body heal for three or four months before beginning the clinical trial. It was good timing because an immunotherapy clinical trial using two drugs was just opening up. It was a double-blind study, meaning no one would know which of the two immunotherapy drugs I would receive. One drug would take down the shields around the cancer cells, while the other one would boost my immune cells.

The clinical trial lasted a year. I didn’t have many side effects at all. I was fatigued, but not enough to take any extra time off from work. I also was a little depressed. I’m not sure if that was due to the treatment or just the fact that I was going through this situation in general. It was minor, and I never had to see a doctor for it. I keep a close eye on lymphedema, a known complication resulting from the removal of lymph nodes. If I start to experience swelling, I will probably begin wearing a compression sleeve.

Based on my side effects and the ones that other people in my clinical trial had, I think I know which drug I received. If I’m right, I believe I am the first Stage III person in the country to receive Opdivo in a melanoma clinical trial. I asked my doctor if I would ever know, but he told me the only way I’d ever be unblinded is if the melanoma returns. In that case, they would have to give me the other drug. That answer was good enough for me—I won’t ask again! I’m cancer-free, I feel great and I’m following up with frequent scans.

I had a tremendous support system. My family constantly checked on me and prayed for me. My friends were there for my surgeries, and my wife was incredible. She’s a nurse, which was a big help. This situation put some big dents in the “princess view” she had of our wedding, but she was a trooper. I made it up to her by finally taking her on a honeymoon to a resort in Grenada. We went big—private hut, butler service and lots of sunblock.

I received exceptional care throughout my treatment, and my medical team did an excellent job of educating me about my condition and immunotherapy. I had some frustrations regarding my clinical trial. I encourage everyone to read the fine print on their consent forms. There are often hidden costs that you don’t expect to have to pay for, so I would address everything with the hospital and clinical trial administrators before getting started. But don't let that discourage you. Health care is always complicated. It’s just best to have a solid understanding of every facet of your treatment plan.

I feel very fortunate that everything worked out like it did. I think it was a combination of being in the right place at the right time and cashing in on some good karma I had out there. If you are considering a clinical trial, my advice is to go for it. You’re not a guinea pig. You’re helping expand the reach of what that drug offers. For me, I found value in helping others who may walk a similar path. Gather opinions, research credible resources and understand the studies.

Most important, stay positive but allow yourself to feel your emotions. You're wholly entitled to feel and express them however you see fit.  It’s not the time to put on a brave face for others. Your emotions guide you through a journey of feelings. Let that happen without guilt, resentment or embarrassment.

Photo: Adam Capezzuto
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