Thriving after Advanced Melanoma at 26: John Elson’s Story
By Renee Orcione, MRA Digital Engagement & Communications Manager | 20 September 2023 | Allies & Partnerships, Melanoma Stories, Treatment
John Elson woke up – on his birthday – and discovered a lump in his neck. The New Yorker wasn’t entirely concerned and initially explained it away as a muscle knot. However, when the lump didn’t go away and he noticed a second one near his armpit, alarm bells started to go off.
If it wasn’t for a friend who was recently diagnosed with leukemia after finding a lump in his neck, John might not have taken immediate action. With his friend’s experience in the back of his mind, John visited his primary care physician who referred him to an Ear Nose and Throat (ENT) doctor for an ultrasound and CT scan.
However, it wasn’t until his doctor biopsied the lump on his chest that he finally got a concrete diagnosis: invasive melanoma.
Receiving a melanoma diagnosis at just 26 years old was a shock for John.
“You never think cancer will happen to you, especially in your 20s," remarked John. "But it can happen to anyone.”
He also couldn’t shake the memory of six years earlier when he was a sophomore in college. His sister noticed a concerning spot on his arm and brought it to his attention, so he scheduled an appointment with a dermatologist, who biopsied the mole. At the time, however, the biopsy did not reveal anything concerning. So, John went on with his busy college life after this incident, never expecting that this near miss would foreshadow more to come.
An Initial Diagnosis and Melanoma Recurrence
After receiving his melanoma diagnosis in the beginning of 2019, John’s first course of action was to find an oncologist. John’s uncle, an oral surgeon, had connections in the medical community and recommended Memorial Sloan Kettering Cancer Center. There, John connected with melanoma oncologist – and MRA funded investigator and advisor – Dr. Paul Chapman and together they made a plan of action.
John underwent surgery to remove the lesion on his chest as well as a lymph node dissection in his neck, confirming his melanoma as Stage 3. Following surgery, John and his team considered adjuvant immunotherapy – additional treatment given after surgery to reduce the risk of the melanoma returning – but agreed to forgo further treatment and instead decided to monitor for any activity with regular scans.
“At a follow up scan three months after my surgery, we saw flashing red lights,” remembered John. A lesion was detected in his lower bowel, elevating his melanoma to Stage 4. Before undergoing surgery, he started a three-month regimen of combination immunotherapy ipilimumab + nivolumab. The lesion in his bowel remained stable while on the combination immunotherapy.
After completing the three months of the two immunotherapies, John underwent surgery to remove a section of his bowel that contained the tumor. He recovered from his surgery over the following weeks, and then started a year-long regimen of monthly infusions of nivolumab. Luckily, he did not experience any adverse side effects from treatment.
Since finishing his yearlong therapy cycle in late 2020, John’s follow up scans have continued to show No Evidence of Disease (NED) and he remains cancer free to this day.
Getting More Involved in the Melanoma Community
“It always felt surreal saying that I had Stage 4 melanoma in my 20s,” said John. “I got really lucky that my life didn’t change much despite my circumstances.”
John always remained positive throughout his melanoma journey. Because he felt physically well throughout treatment, he was able to continue much of his regular life without disruption – from playing golf with friends to working as a financial advisor in the city. “Recovering from my surgeries was my biggest hurdle.”
John’s care team also played an important role in his positive outlook. His surgeon at MSKCC, MRA funded investigator and advisor Dr. Charlotte Ariyan, connected John to the Melanoma Research Alliance (MRA) as a resource for patients. Through MRA, he was introduced to fellow melanoma survivor Jeff Rowbottom – and the two developed a connection through their shared experiences. Jeff sits on MRA’s Board of Directors and is a co-founder of the yearly Leveraged Finance Fights Melanoma (LFFM) fundraising event which has raised over $23.2 million to support MRA’s lifesaving research program.
“After meeting Jeff and learning more about MRA and LFFM, I wanted to get involved in the melanoma community for the first time,” remarked John. Now living in South Carolina, John has hopes of planning his own awareness and fundraising event to advance melanoma research.
Raising Awareness and Championing Melanoma Research
Raising awareness of melanoma amongst younger individuals and advocating for melanoma research funding have become significant causes to John.
It unfortunately took his own diagnosis to learn that melanoma is one of the most common cancers among young adults in the United States. He still thinks of his friend who had leukemia – whose story gave him the push he needed to see a doctor – when reflecting on his own journey and the importance of patients knowing they aren’t alone. “If my story can help just one person in the same way my friend’s story helped me, then sharing about my experience is worth it,” said John.
Equally important to John is being a champion for melanoma research – recognizing the huge leaps and bounds in treatment options over the years – which wouldn’t have been possible without the support of organizations like MRA. “I was told that my prognosis would have been much more grim had I received it a decade or even five years earlier,” John shared. “Imagine where we can be 10 years from now if we continue to invest in research.”