Metastatic melanoma survivor: Why not me?

In 2012, my dermatologist in South Carolina noticed a bump on my cheek. A biopsy showed that I had stage IV melanoma. 

We’d heard immunotherapy had proven successful in treating certain types of melanoma. But because I had an autoimmune disease, I was not eligible for this treatment at the time. Researchers still needed to figure out how to safely administer immunotherapy to patients with autoimmune conditions.

So, I had the cancerous tissue removed through Mohs surgery. This type of surgery uses precise measurement techniques that leave healthy tissue intact.  My wife, Pam, and I felt positive after my successful surgery.

By 2014, I learned the cancer had returned and metastasized to both my lungs. My daughter had recently gotten engaged, and it was hard to hear I may not live until her wedding. I decided not to give up, so I sought another opinion.

My metastatic melanoma diagnosis and treatment

My wife and I came to MD Anderson, where we met with melanoma experts in the Melanoma and Skin Center. They referred me to thoracic surgeon Dr. Wayne Hofstetter. I underwent two thoracotomies with lung resections -- one on each lung. I was overjoyed to recover in time to walk my daughter down the aisle.

During a routine scan in 2016, I found out that more tumors had appeared. This time, radiation oncologist Dr. Quynh-Nhu Nguyen performed stereotactic body radiation therapy (SBRT). This eliminated the tumors. I was in remission once again.

But in 2018, I started having difficulty swallowing certain foods. My gastroenterologist in South Carolina performed an endoscopic ultrasound. The results showed a tumor on a lymph node next to my esophagus. After sending the results to MD Anderson, we made plans to return to Houston. Dr. Hofstetter removed the tumors through a robotic surgery. This type of surgery was effective in removing these hard-to-reach tumors.

Treating my latest melanoma recurrence with immunotherapy and proton therapy

In July 2020, I was supposed to return to Houston for my check-up at MD Anderson. But due to COVID-19, I did not want to travel, so my MD Anderson care team allowed me to have scans done in South Carolina. On July 7, I had my PET/CT, MRI and endoscopic ultrasound. The results showed the tumors had returned. And one was eroding into my esophagus. I made plans to return to Houston for treatment. On July 15, I met with my care team at MD Anderson. They decided my best treatment option was a combination of pencil beam proton therapy and immunotherapy,  which I now qualified for, thanks to research advances. 

Finding hope during proton therapy at MD Anderson

I started proton therapy on July 27. I received 25 treatments to my esophagus. Proton therapy caused me the least amount of side effects of any treatment that I have had. Recovery from surgery may have been the hardest, but even that was short-term. Dr. Nguyen and the staff at the Proton Therapy Center helped make the treatments painless. Seeing the staff made my treatments an event that I looked forward to each day.  

I had some mild discomfort when swallowing certain foods and juices following my proton therapy. I also experienced indigestion. To remedy this, I would take an antacid and eat softer foods. For me, the benefits of proton therapy outweigh any temporary discomforts.

My immunotherapy treatment

On July 24, I received two intravenous injections of the immunotherapy drug Keytruda.

I will continue this treatment every six weeks for the next two years. The only immunotherapy side effect I’ve experienced so far has been neuropathy.

I felt safe at MD Anderson during the COVID-19 pandemic

Though I’d initially avoided traveling to MD Anderson for my scans in early July, the precautions MD Anderson has taken to protect its patients from COVID-19 reassured me. Every employee and patient I saw wore a medical-grade face mask, and there were hand sanitizer stations everywhere.

As a survivor with reduced lung capacity, I am very conscious and aware of safety measures. That’s why I was thrilled that MD Anderson takes patient safety so seriously. Even the ancillary facilities, like the Rotary House, required visitors to wear masks and practice good hand hygiene.

 I was also very happy to see MD Anderson limiting the number of people on its campus. That reduced my safety concerns even more. 

Helping other cancer patients become survivors

When I first came to MD Anderson in 2014, I learned that I was a cancer survivor the day I was diagnosed. That has impacted my life in many ways.

MD Anderson has a wonderful mission of not just treating cancer, but ending cancer.

To support this mission, my wife and I created the Wilkes Family Cancer Autoimmune Research Fund in 2014. Our goal was to help make immunotherapy treatment an option for cancer patients with autoimmune diseases. We donated $1 million to support MD Anderson’s research into immunotherapies for autoimmune patients.

Now I advise other survivors not to harbor “Why me?” feelings. Instead, modify that to “Why not me?” I want to use the moment to bring hope, comfort and love to other survivors -- and to remind them to enjoy every second celebrating life.

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