How Clinical Trials Are Giving a Father of 2 Hope Amid Skin Cancer Battle
- A 48-year-old father of 2 grew concerned after a spot believed to be a birthmark on his groin started changing in appearance. A biopsy determined it was a rare form of stage 2 melanoma, a type of skin cancer. After some failed treatments, he’s hoping a clinical trial leads him to effective treatment.
- In melanoma, the cells change in a way that allows them to spread to other organs, making it a severe type of skin cancer that requires quick attention and treatment. In early-stage diseases, surgery can be curative.
- Experts recommend checking your body for unusual spots or moles at least once a month. If you find any new spots or changes in size or color, it’s important to see a doctor immediately.
- Clinical trials help doctors better understand cancer and discover more effective treatment methods. They also allow patients to try a treatment before it’s approved by the U.S. Food and Drug Administration (FDA), which can potentially be life-changing.
- Despite the great benefits of clinical trials, they also come with risks (like potential side effects that are not fully understood yet). People interested in participating in clinical trials must first talk with their doctor to see if they would be a good fit.
- For help finding a clinical trial that’s right for you, try our easy-to-use Clinical Trial Finder.
A father of two who noticed changes to his birthmark had reason to be concerned. The mark was about the size of his fingernail located on his groin, and after having it examined, he learned it was an aggressive and rare form of advanced melanoma, a type of skin cancer.
Ironically, despite his diagnosis, up until treatment, Jonathan Muggleton, 48, said he felt fine.
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Experts recommend checking your body for unusual spots or moles at least once a month. If you find any new spots or changes in size or color, it’s important to see a doctor immediately.
WATCH: Understanding Your Skin Cancer Risk
According to research published in the International Journal of Clinical and Experimental Pathology, mucosal melanomas mainly originate from the “mucosa of the nasal cavity and accessory sinuses, oral cavity, anorectal, vulva, and vagina.”
Surgery is the primary line of treatment; however, researchers say, “there is no effective systemic therapy for these aggressive tumors.”
Muggleton’s cancer had spread to nearby lymph nodes, making it stage 2. He underwent several cycles of immunotherapy treatment. Immunotherapy works by having doctors re-engineer the body’s immune system to fight cancer.
Helping You Cope With Skin Cancer
However, after eight infusions, the treatment started having little effect, forcing Muggleton to find a different treatment option.
“The tumor was in an unusual location at the top of my lung, near my heart and my esophagus. The medical team wasn’t sure anyone had had a tumor removed from there before,” Muggleton explained.
“Mr. Chaudry showed me the tumor afterward. It was a big black mass, about 7 cm by 5cm by 5cm. Eventually, it would have crushed my food pipe or meant I couldn’t breathe,” Muggleton added.
Luckily, Muggleton was able to get the tumor removed after undergoing robotic surgery. His recovery went so well that it defied his doctor’s expectations. He says he resumed exercising on his bike within just two weeks.
However, just as the research above suggested, mucosal melanomas are aggressive, and after briefly reaching remission, the father of two learned new tumors appeared in scans. He’s now hoping a different and costly treatment will offer him some relief or, at the very least, give him a few more years. His family has set up a GoFundMe to help pay for the expensive treatment.
“Looking back over the four years, I was very lucky for it to be spotted, for there to be surgical and drug options. Even if it hasn’t always been successful or perfect, it has been knocking it on the head and slowing the progress,” Muggleton said.
Understanding Melanomas
Melanoma starts in the same cells that give your skin, hair, and eyes their color. In melanoma, the cells change, allowing them to spread to other organs.
Changes to a mole you’ve had for a while or a new growth on your skin could be signs of melanoma, according to SurvivorNet’s experts. You’ll want to watch them and tell your doctor about any changes you notice.
You’re most likely to find melanoma on sun-exposed skin areas like your face, neck, arms, and legs. Surprisingly, you might also find them in other places as well, like:
- The palms of your hands or soles of your feet
- On your eyes or mouth
- Under your nails
WATCH: Melanoma treatment options
How Clinical Trials Give Advanced Cancer Patients Hope
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
Dr. Beth Karlan is a gynecologic oncologist at UCLA Health. She says clinical trials aim to advance cancer research to the point where the disease becomes manageable, akin to diabetes.
“Clinical trials hopefully can benefit you, but is also providing very, very vital information to the whole scientific community about the effectiveness of these treatments,” Dr. Karlan said.
“They can be life-saving. We’ve seen many in the last few years of children and adults who have participated in trials and have had miraculous results,” Dr. Karlan continued.
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 the study is expected to take
- A form confirming you are participating in research voluntarily
- Whether any compensation or additional medical care is available if some 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 be free for 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 before signing up to participate in a trial.
The Affordable Care Act also mandates that health insurance companies cover routine patient care costs while people are enrolled in clinical trials.
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 for a good participant.
Another crucial part of clinical trials is finding the right one for you. SurvirorNet has a resource called the Clinical Trial Finder to help.
The portal provides resourceful information to more than 103,000 active clinical trials. You can research this tool for yourself or someone else based on a few simple questions about your condition and location.
Learn more about SurvivorNet's rigorous medical review process.
