Mucosal melanoma survivor: 4 reasons I joined a clinical trial at MD Anderson

When I was diagnosed with stage III mucosal melanoma in May 2024, so many questions filled my mind. Who should I see? What should I do? And, where could I learn more about this rare and aggressive disease?  

Fortunately, it’s now easier than ever to obtain information. But that turned out to be a double-edged sword. The more I read online, the more I realized I had options. There are cancer centers to deal with literally every conceivable form of that disease. I had no idea there were so many.  

Here are four reasons I decided to join a clinical trial at MD Anderson. 

Teamwork and efficiency impressed me

I was impressed with MD Anderson from the very first phone call. When I called to make an appointment, I mentioned that there were two doctors I was interested in. The intake specialist asked me which one I preferred. I said either would be fine, but if I had to pick one, it would be Dr. Ehab Hanna, a head and neck surgeon. She replied, “Then, that’s who we’ll schedule you with.”  

I ended up seeing Dr. Hanna within three weeks. I had 12 appointments with him and other specialists at MD Anderson over the course of five days.  

The teamwork and efficiency my care team demonstrated were nothing short of amazing. We got so much accomplished during that first five-day visit that I was actually able to start my treatment before returning to Colorado. 

No rush to surgery

I also appreciated the fact that Dr. Hanna didn’t want to rush right into surgery. Instead, he told me about a clinical trial called PRISAM that he thought would be a great option. He wanted me to discuss it with Dr. Devarati Mitra, the radiation oncologist leading the study. He also wanted me to meet with melanoma medical oncologist Dr. Rodabe Amaria. 

Historically, treatment for this type of cancer has started with surgery. That was followed by radiation therapy and then possibly other therapies, like chemo. Instead, this clinical trial would reverse that sequence. I’d start with two infusions of immunotherapy, given three weeks apart. Then, I’d have 20 sessions of radiation therapy. Finally, I’d have surgery. 

None of the drugs or surgical techniques were brand new. It was just doing things in a new order. So, the trial wasn’t really “experimental” in the traditional sense. The first few patients enrolled on the PRISAM trial had had promising preliminary results, though, which gave me confidence that this treatment approach was worth trying. Since I’d be getting the standard treatments — just in a different order — I didn’t see a whole lot of risk. 

The clinical trial worked

Even so, I was totally surprised when I went in for my first set of scans six weeks later. The tumor, which had started about the size of my little finger, had already shrunk by 25%. Dr. Mitra was clearly excited when she told me and my wife, Lynn. She said that based on this observation, it was likely I would continue to do very well on this protocol.  

Dr. Mitra was right. By the time I finished my radiation treatments four weeks later, the tumor had shrunk by 50%. And, when it came time for surgery, scans showed there was nothing left to remove. Dr. Hanna cleared out the dead tissue and took some samples for biopsy to be sure. The results confirmed it: the cancer was gone. We were elated. 

‘An uplifting atmosphere’

My wife and I are both retired. So, we could have gone anywhere in the world for my mucosal melanoma treatment. We chose MD Anderson. I am so thankful today that we did. 

From the very beginning, everyone we have interacted with there has been kind, compassionate, professional and honest. The way Dr. Hanna explained everything made us feel so comfortable. His confidence gave me confidence that we were in the right place. 

I’m 20 pounds lighter now than I was before my diagnosis because I developed oral thrush and lost my sense of taste and smell multiple times. I also still have some little spots on my abdomen that itch. 

But I’ve shown no evidence of disease since Sept. 16, 2024, and I’m done with treatment. I only need to return for checkups now every four months. Even that frequency doesn’t bother me, though, because MD Anderson has become a place that we actually look forward to going. We’ve made so many friends there, and everyone is so positive. It really is an uplifting atmosphere. 

I pray every day that there will be no “rematch” between me and cancer in the future. But if there is, I know who will be on my team. 

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