Man, Early 40s, Noticed a Swollen Lymph Node In His Groin. It Turned Out To Be a Rare Form Of Skin Cancer: Mucosal Melanoma

“Before I knew it, I was trying to find a way to fight the cancer and not feeling sick at all, but the doctors were saying I’m pretty sick,” Keller told UC Health Today.

According to the Melanoma Research Foundation, mucosal melanoma is “a rare and serious form of melanoma that starts in the moist inner surfaces of the body, like the inside of the nose, mouth, throat, anus, vagina or cervix.”

“These areas contain pigment-producing cells (called melanocytes) and in rare cases, these cells can become cancerous. Unlike most other melanomas, mucosal melanoma is not caused by sun exposure,” the foundation explains.

The father of one was determined to do whatever it took to battle the disease, particularly for his son, prompting him to join clinical trials and explore experimental treatments.

Keller—whose father-in-law also battled a type of aggressive skin cancer known as melanoma, a completely different disease—ultimately learned the disease initiated in his rectum and spread to nearby lymph nodes.

Reflecting on an earlier warning sign he experienced—rectal bleeding—he recalled it being attributed to hemorrhoids, when in actuality, it was linked to a primary tumor in his colon.

Due to Keller’s hesitance to pursue standard treatment, fearing the cancer could return after procedures such as lymph node dissection and immunotherapy, the devoted husband and father opted instead to take part in clinical trials.

His doctor, Dr. Theresa Michelle Medina, a medical oncologist who specializes in cutaneous oncology at the University of Colorado Cancer Center, also spoke with UC Health Today, explaining, “We don’t know much about why it develops or who is predisposed. Genetic drivers are different, and response patterns to immunotherapy are different compared to the more common cutaneous melanomas.”

Dr. Medina added, in regards to his treatment decisions, “There were two drug therapies approved that showed to be effective, but they also carried high rates of side effects.

“There were clinical trials ongoing at the time with another promising combination that was much better tolerated. People were having good responses and not having the immune toxicity that goes along with it.”

Keller admitted treatment was tough as he didn’t “feel sick,” adding, “It was hard to believe what these doctors were telling me. It’s overcoming those physiological pieces.”

After two clinical trials didn’t have success, it was the third one he joined, called the Tumor Infiltrating Lymphocytes (TIL) trial, which helped him beat the disease.

RELATED: TIL Therapy with Amtagvi: A Promising New Way To Treat Metastatic Melanoma — And Potentially Many Other Cancers Too

This type of therapy uses TIL, or tumor-infiltrating lymphocytes, from a patient’s own tumor to amplify T cells, a type of white blood cell that plays an important role in helping the immune system function.

How the personalized treatment works:

• Doctors extract TILs from a sample of the patient’s own tumor.
• They multiply the cells in the lab to grow billions of them
• Then, they inject all of the lab-made cells into the patient, effectively creating an army of cancer-fighting cells.

Before putting the cells back, the patient undergoes chemotherapy. This is to make space in their immune system for the new, powerful cells.

After that, the patient receives a drug to help these cells grow stronger and more active in the body.

Keller, who kept on working as a co-director of a special education program and staying physically active, noted that “not sitting home and feeling sorry for myself, that helped” him throughout his fight.

He had originally been expected to stay in the TIL trial for three years with imaging every three months, but after about a year, his scans came back showing no signs of cancer. He now undergoes follow-up scans every six months.

Resilience: Staying Positive Despite Adversity

Understanding The Signs & Symptoms of Mucosal Melanoma

The Melanoma Research Foundation advises to contact your doctor if any of the following symptoms arise:

• An unfamiliar or unusual spot, lump, or sore inside the mouth or nasal area
• Wounds that fail to heal
• Ongoing nasal blockage, stuffiness, or frequent nosebleeds
• Unexplained bleeding from the rectum or vagina
• Changes in vaginal discharge, or persistent pain or itching
• Hemorrhoids that persist or worsen over time
• Pain or discomfort when having a bowel movement
• Unexplained changes in bowel habits
• Unexpected weight loss or fatigue

Melanoma Research Foundation also says that even with major progress in understanding mucosal melanoma, it still remains a very difficult cancer to treat.

“While the new immunotherapy and targeted therapy treatments have greatly improved outcomes in patients with cutaneous melanoma and can help some patients with advanced mucosal melanoma, overall, they do not work as well in mucosal melanoma,” the foundation states.

“To develop more successful treatments, we must support combined efforts between the patients dealing with this disease, the doctors caring for them, and the laboratory and clinical researchers working to develop new treatments for mucosal melanoma.”

What to Consider When Clinical Trials Are an Option?

Within the U.S., all new drugs must go through clinical trials before the FDA approves them. Although the rewards of clinical trials can be great, they also come with risks. Talking to your doctor about this before enrolling in a trial is important. Some risks to consider include:

• The risk of harm and/or side effects due to experimental treatments
• Researchers may be unaware of some potential side effects of experimental treatments
• The treatment may not work for you, even if it has worked for others

WATCH: Clinical trials can be life-saving.

Before you enroll in a trial, you must be allowed to read the consent documents thoroughly and to ask any questions you may have. The documents will likely contain the following:

• The purpose of the research
• Any risks and benefits expected from the research
• Information about procedures that may cause discomfort (like frequent blood tests)
• Any alternative procedures the patient might consider instead
• How the patient’s information will be kept private
• How long is the study expected to take
• A form confirming you are participating in research voluntarily
• Whether any compensation or additional medical care is available if some sort of injury occurs
• The patient’s rights (like the right to stop research in the middle of the trial)
• Contacts for any patient questions

Patients are allowed to walk away at any time during the trial. Understanding your rights as a voluntary patient is important before you participate in a clinical trial, and understanding that the treatment may not work is also crucial.

Do Clinical Trials Cost Participants Anything?

Clinical trials may also have no extra cost for the participants, as the study’s sponsor may pay for the treatment and any additional care. Some sponsors even pay for travel to and from appointments or treatment centers. Patients should ask what will be paid for before signing up to be part of a trial.

The ‘Placebo’

During the treatment of an experimental drug in a clinical trial, while some participants receive the real thing, others do not. These participants receive a placebo.

The placebo is “an inactive substance or other intervention that looks the same as and is given the same way as an active drug or treatment being tested. The effects of the active drug or other intervention are compared to the effects of the placebo, as defined by the National Cancer Institute.

In some cancer clinical trials that are “randomized,” patients who enroll are randomly assigned to receive either a placebo or the new experimental drug being studied. If the clinical trial is “double-blinded,” that means that neither the patients nor the doctors running the clinical trial know who’s in which group. This is an important part of a clinical trial design because it safeguards against bias and the possibility of skewed results.

It’s important to know that getting zero treatment isn’t usually the reality of the “placebo arm” anyway.

Instead, when patients with life-threatening cancers enroll in randomized clinical trials, the two groups are often broken into the new, experimental drug and a “control” group that receives the “standard-of-care” treatment.

Treatments considered standard of care are those that experts accept as the go-to treatment for specific cancers. Standard-of-care, in other words, is the most used treatment.

In many cases, it might involve a combination of chemotherapy, surgery, or radiation, but not always.

How to Find a Clinical Trial

If you want to participate in a clinical trial, your first step should be to talk with your doctor. They can address many of your initial questions and help you determine if you would make a good participant.

Another crucial part of clinical trials is finding the right one for you. SurvivorNet has a resource to help with this called the Clinical Trial Finder.

The portal provides resourceful information to more than 100,000 active clinical trials. You can research this tool for yourself or someone else based on a few simple questions about your condition and location.

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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