28-Year-Old Mom of Two Experiences a Mole Grow and Spread Across Her Hairline, Leading to Stage 4 Melanoma Diagnosis. She Says Her Faith Is the Only Thing Giving Her Hope

At just 28, Hillary Castenada’s life was upended when what seemed like a harmless mole on her hairline was later revealed as advanced melanoma, an aggressive form of skin cancer. This diagnosis set the young mother of two on a grueling journey through treatment, including immunotherapy.

Castenada described herself as “healthy” until the mole she described to The Sun was a “dark, raised, ugly mole” spread across her scalp. She then went to her doctor to have it checked.

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She received a biopsy of the mole, which came back benign (non-cancerous), which lowered her dermatologist’s concerns. However, shortly after, Castenada’s mole, which had been removed for the biopsy, returned.

“But that summer it grew so fast,” Castenada said.

Further testing revealed the mole had progressed to stage 3 melanoma.

Melanoma starts in the same cells that give your skin, hair, and eyes their color—the cells in melanoma change, allowing them to spread to other organs.

The news that she had cancer left Castenada “crushed.”

“All I knew how to do was to look at how to fight this, and I did,” the mother of two said.

 

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However, her skin cancer journey was still in its early stages. She first received a skin graft from other parts of her body to cover the areas of her head affected by treatment. Then she turned to immunotherapy to give her cancer-fighting an added boost.

Immunotherapy is often dubbed a “living drug” for its transformative ability to reprogram the body’s immune cells to hunt down and destroy cancer cells.

Castenada’s treatment cycle involved immunotherapy every four weeks for two years. The side effects from treatment began to take a noticeable toll on her, both physically and emotionally.

“Anxiety around [cancer] scans was a real thing, but thankfully, my scans were clear,” Castenada said after learning her treatment had been working. However, her moment of reprieve was short-lived because she discovered a hardened lymph node elsewhere on her body.

Not taking any chances, she called her oncologist, who performed additional tests that revealed her cancer had turned metastatic, meaning it had spread to distant parts of her body, including her right lung. By this point, the side effects of immunotherapy began to take their toll, causing her skin to swell, including her face.

 

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“It got to the point where my left eye was swollen shut and my neck was even full of fluid,” Castenada explained.

Immunotherapy side effects may include fatigue, nausea, joint pain, and even changes in blood cell counts. In extreme cases, it can trigger allergic reactions or the need to discontinue therapy altogether.

Going through treatment and reeling from its side effects affected Castenada’s ability to interact with her children and help out around the house.

“It hurt my heart, but my parents and husband really stepped up to take care of everything,” she explained.

Throughout her long and winding cancer journey, Castenada says that she remains optimistic about the future.

 

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Now 32, Castaneda says it feels like her tumor is shrinking and the swelling has also subsided.

“My pain is finally gone as well. Now, we are just waiting for the TIL cells as part of my immunotherapy to work their magic.”

“My faith tells me everything is going to be OK regardless of what is going on around me,” she adds.

Immunotherapy Side Effects During Treatment for Melanoma

A new study published in JAMA Oncology is shedding light on the long-term side effects of immunotherapy in melanoma patients—revealing that chronic complications may be more widespread than previously thought.

“Chronic and long-lasting side effects were more common than we expected and involved a variety of often overlooked organs like the thyroid, salivary glands, and joints,” said Dr. Douglas Johnson, senior author of the study and associate professor of medicine at Vanderbilt University Medical Center.

WATCH: Tell Your Doctor About Immunotherapy Side Effects

Despite the findings, Dr. Johnson emphasized the groundbreaking nature of immunotherapy, especially anti-PD-1 drugs. “It has been an absolute game-changer for patients with melanoma,” he noted. “I think the first thing to recognize is how really transformative the Anti-PD-1 drugs have been… patients can have very long-term responses to treatment.”

Still, for patients with advanced melanoma—especially those who’ve undergone surgical removal and have a low risk of recurrence—Dr. Johnson advised more nuanced conversations around treatment. “So determining whether the risks of the side effects, weighing the benefits of treatment with the risks of the side effects, can be an important consideration,” he said. “What our study did was we basically saw that some of these side effects were more common, really, than had been previously reported.”

Reported side effects can range from mild to severe, including dry throat, inflammation of the eye blood vessels, numbness, or tingling. And for many, the decision comes down to weighing symptom severity with potential longevity benefits.

WATCH: Managing Immunotherapy side effects.

Dr. Anna Pavlick, another expert in melanoma care, added context around immunotherapy management. “Depending upon the severity, it depends upon how we manage it,” she said.

“The percentage of patients who have very serious side effects from immunotherapy is contingent upon whether patients will get one medicine or a combination of two medicines.”

She explained that patients receiving a single immunotherapy drug face a 10–15% chance of experiencing severe reactions like rash or diarrhea. But for patients with metastatic melanoma, a dual-drug regimen—though more effective at controlling the cancer—comes with about a 50% chance of developing side effects.

FDA-Approved Immunotherapy for Melanoma

There are several FDA-approved immunotherapies for melanoma. Each is approved for certain instances of melanoma.

• Tebentafusp-tebn (Kimmtrak)
• Aldesleukin (Proleukin)
• Atezolizumab (Tecentriq)
• Dostarlimab (Jemperli)
• Interferon alfa-2b (Intron A)
• Ipilimumab (Yervoy)
• Nivolumab (Opdivo)
• Peginterferon alfa-2b (Sylatron/PEG-Intron)
• Pembrolizumab (Keytruda)
• Talimogene laherparepvec (Imlygic)
• Imiquimod (Aldara)

The goal is to steadily reduce the risk of recurrence in all patients. It’s not a one-size-fits-all approach. Some people may not be candidates for this therapy, and side effects vary from person to person.

Understanding Melanomas

Melanoma starts in the same cells that give your skin, hair, and eyes their color. In melanoma, the cells change in a way that allows 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.

WATCH: How do you perform a skin check using the ABCDEs?

SurvivorNet experts recommend avoiding unprotected sun exposure because ultraviolet (UV) radiation can lead to melanoma. Tanning beds pose ultraviolet radiation risks for skin cancer and should be avoided. Many dermatologists recommend using spray tans to reduce the risk of melanoma skin cancer.

The most important thing to look out for when it comes to finding melanoma is a new spot on your skin or a spot that is changing in size, shape, or color, SurvivorNet’s medical experts say.

Treatment options for melanoma include targeted therapy and immunotherapy, which give people a better chance of living a long and healthy life than ever before. If you’re diagnosed with melanoma, there’s a good chance surgery will be the treatment your doctor recommends.

Cancer removal usually leads to a cure in the early stages of the disease. After surgery, the removed tissue and lymph nodes are examined to measure the melanoma and determine if it has clear margins. Clear margins mean the cells around the area of tissue that was removed don’t contain any melanoma. When no cancer cells are left around the removed area, your cancer is less likely to return.

WATCH: Beating Aggressive Melanoma: An Immunotherapy Success Story

For melanoma patients who need additional treatment after surgery, they are likely to receive adjuvant therapy (treatments administered after surgery). Adjuvant therapy is designed to improve outcomes and decrease the risk of recurrence.

Questions to Ask Your Doctor

If you are diagnosed with skin cancer, you may have some questions for your doctor. SurvivorNet suggests the following to help you on your cancer journey.

• What type of skin cancer do I have?
• What treatment options exist for my type of melanoma?
• Will insurance cover this treatment?
• Would treatment through a clinical trial make sense for me?
• What resources exist to help manage my anxiety because of this diagnosis?

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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