By Renee Orcione, MRA Digital Engagement & Communications Manager
Advanced melanoma challenges patients and families in ways they often could never expect. For New Yorker Paloma Soledad, various side effects from her treatment made it difficult to feel comfortable in her everyday clothing. As a creative artist and designer, she saw this as an opportunity to find a solution to a problem faced by not only herself but many others, and thus founded her sustainable adaptive clothing and accessory line Krysalis Kouture.
“This entire journey has enabled me to find my community and meet some of the most incredible people that I would have never met any other way,” remarked Paloma.
Paloma’s journey with melanoma began over a decade ago in 2012, when a mole on the sole of her foot caught her eye and she had it removed. Initial pathology results showed the lesion was benign, but when it grew back over the following years, her concerns arose again.
A Rare Melanoma Diagnosis at 38 Years Old
By late 2015, Paloma could no longer ignore the evolving spot on her foot. With undefined borders and a changing texture, it met many of the hallmarks of melanoma, and she sought to have the concerning lesion biopsied again by a local dermatologist. This time, Paloma was officially diagnosed with acral melanoma — a rare melanoma subtype — at just 38 years old.
While roughly 90% of melanomas are attributed to UV exposure and form on sun-exposed skin, the remaining 10% form on areas rarely exposed to the sun, such as on palms and soles, underneath nails, in mucous membranes, and in tissues of the eye. These 10% of diagnoses are known as rare melanoma subtypes.
“I always felt like I was trying to escape the sun,” remembered Paloma of her childhood growing up in Hawaii. While her family spent significant time at the beach in support of her father’s surfing lifestyle, young Paloma chose to avoid the sun. “I was totally cool with being pale, and I’ve remained that way ever since,” she said.
Assembling a Care Team
After her initial diagnosis, Paloma met with surgical oncologist Dr. Daniel Coit of Memorial Sloan Kettering Cancer Center. Dr. Coit, a melanoma specialist and surgical oncologist, introduced lymph-node mapping and sentinel lymph-node biopsy to the field in 1991. Together, these procedures can determine during surgery whether melanoma has spread beyond its site of origin.
Dr. Coit performed a wide local excision to remove the lesion on Paloma’s foot and a sentinel lymph node biopsy that found several affected lymph nodes — confirming her melanoma as Stage 3C. In addition to recovering from surgery, her follow up plan included routine dermatology appointments, body scans, and total body photography to hopefully detect a potential recurrence at the earliest possible time.
Roughly a year later, while undergoing a routine follow-up scan, Paloma’s doctors discovered an enlarged lymph node in her groin, indicating that her melanoma may have returned. She was referred to urologic surgeon Dr. Vincent Laudone at MSKCC, who specialized in laparoscopic and robotic surgery. Fourteen affected lymph nodes — later confirmed as melanoma — were removed via laparoscopic surgery. Thinking they were once again in the clear, Paloma and her care team returned to regular follow up scans.
“My care team and I discussed adjuvant therapy, but we ultimately decided to continue with follow up scans,” remembered Paloma. Adjuvant therapy is an additional treatment given after the primary treatment for a disease. In melanoma, adjuvant therapy is sometimes used after surgery to reduce the risk of melanoma returning.
Another year passed and Paloma was at a follow up appointment when scans detected lesions in her lungs and liver. A biopsy confirmed that her melanoma was continuing to spread and was now classified as Stage 4. Due to the location of the metastases, surgery was not an option. Paloma met with MSKCC melanoma specialist and MRA-funded investigator and advisor Dr. Paul Chapman. In February of 2018, Paloma began treatment with two checkpoint immunotherapies combined, Nivolumab (Opdivo) + Ipilimumab (Yervoy).
Living with Side Effects from Immunotherapy Treatment
After just two infusions of the combination therapy, Paloma’s melanoma stopped growing and was considered stable, and has remained that way ever since. However, with these promising results came side effects from her treatments.
“I always told myself that the side effects meant my treatment was working,” remembered Paloma. “It worked, and I wouldn’t be here today without it.”
Amongst several other challenges including muscle atrophy, weight loss, and skin sensitivity, Paloma also experienced issues with her lymphatic fluid circulating throughout her body. As a result, she underwent multiple surgeries and had tubes implanted in her lungs, heart, and abdomen to help circulate and drain the fluid. This persisted for nearly a year and a half and meant that Paloma was living with various drains and tubes attached to her body 24/7.
During this period, Paloma was in and out of the hospital for frequent bloodwork and scans, and wearing her normal wardrobe became increasingly difficult. She resorted to wearing maternity clothes to feel more comfortable. “I was lying in bed one day and thought to myself that I could create an adaptive clothing line to help people like myself who are dealing with medical issues regain a sense of normalcy,” she said.
Launching an Adaptive Clothing Line
Paloma started doing some research into adaptive clothing and found that not much existed, and what did exist was not fashionable. “A lot of the products out there for chronic illness or cancer patients seem like an afterthought,” Paloma remarked. This was the final push she needed to officially launch her own brand, Krysalis Kouture.
Last year, Krysalis Kouture debuted with a line of headscarves printed on fabrics depicting her partner’s artwork. “I wanted to create something intentional, stylish, and that makes the person wearing it feel beautiful,” said Paloma. For Paloma, the inspiration for the headscarves came from personal experience: due to the stress her body was under at the time, she lost much of her hair.
For Paloma and Krysalis Kouture, the headscarves were just the beginning. She has recently launched a line of garments with unique features that make receiving treatment easier, and she will slowly roll out new pieces for all seasons. Her goal is that her adaptive clothing line will work for everyone regardless of their illness or the side effects they may be facing, all while looking beautiful and being made sustainably.
“Starting a bespoke adaptive wear brand in a world that’s saturated with fast fashion can sometimes feel like an uphill battle,” remarked Paloma. “It’s a challenge that holds deep significance for me. Having grappled with my own changing body, I’m driven by a personal mission: to elevate and diversify the fashion choices available to patients.”
Not only is Paloma working toward her goal of helping people through her Krysalis Kouture creations, but she is also determined to give back in other ways. A few years ago, Dr. Chapman introduced Paloma to the Melanoma Research Alliance (MRA) as a leader in advancing melanoma research. When the timing was right, Paloma knew she wanted to partner with MRA and donate a portion of proceeds from her collection to melanoma research.
“I was inspired to connect with an organization that had a hand in funding the treatments that saved my life,” said Paloma. “Each purchase a customer makes enables us to contribute more to this inspiring cause, helping us make the healing journey more compassionate, dignified, and yes, even fashionable.”