Overcoming Brain Mets & LMD: Sean Wachter’s Melanoma Journey

Ten years ago, Sean Wachter never expected to have a loving spouse, children, or a life that feels worth living. That’s because, by his own admission, he’s done more living in the past 7 years than he did in the prior 31 as he overcame stage 4 melanoma with leptomeningeal disease (LMD) – where melanoma invades the membranes that surround your brain and spinal cord. Through a combination of radiation, immunotherapy, and BRAF/MEK targeted therapies, and the love and support of his friends and family he was able to overcome what is often a fatal diagnosis.

“I truly believe that melanoma is the most beautiful thing that could have happened to me,” says Sean. “It humbled me – and in overcoming it – gave me this beautiful life and family. But it wasn’t an easy journey.”

Fighting for a Diagnosis

In early 2016, four years after an accident that initially left him paralyzed, Sean was just starting to get his feet back underneath him. He’d undergone multiple surgeries, relearned to walk, and was eager to restart life but kept experiencing episodes of dizziness, neuropathy, and nausea.

While on a date 3.5 years after his accident, he lost feeling in his face in an episode of Bell’s palsy. Alarmed, he went to the hospital where it was pointed out he was also wearing two different shoes and only had on one sock. At the hospital they performed a CT scan, but nothing out of the ordinary was found. The doctors reasoned that it was probably just stress and sent him home.

During a second episode, he became so dizzy that he took out a neighboring table in a fall. Once again doctors could find nothing wrong with him, but suggested it was dehydration and encouraged him to drink adequate fluids.

These episodes, while not life threatening on their own, were progressively getting worse. Despite this, his doctors ignored his concerns: “They kept telling me that this was normal for someone who had spinal injuries,” recalls Sean. “I knew that this was wrong, it just didn’t add up to me.”

By September, his situation continued to deteriorate. However, his doctors continued to stonewall and refused additional scans. 

“They just kept telling me I was dehydrated and every time I pushed for a scan they responded that I wasn’t sick – that this was all in my head,” says Sean.

Afraid to be home alone for extended periods, he decided to stay at his parents’ house. This was insightful, because ten minutes after his Dad left for an errand, Sean had a massive stroke. Slurring his words, he was able to mash out the correct buttons to call for help.

He was rushed to the emergency room, but this time his concerns were taken seriously. It took the neurologist seconds to identify a golf ball sized lesion in his cerebellum.

After his care team was able to control bleeding through a variety of transfusions, Sean underwent surgery to remove the tumor. After removing the tumor, it was analyzed by a pathologist who determined that it was melanoma. Sean was told five days after the operation.

“I didn’t cry – didn’t do much of anything,” says Sean. “I want to say I was stoic, but it was probably more numb than anything.”

As he recovered, his hospital stay was extended, first by days and then weeks. His friends and family, determined to make his time at the hospital as normal and comfortable as possible, made regular visits, especially for Monday Night Football with pizza and coolers in tow.

Sean Faces Stage 4 Melanoma with Brain Metastases

After he stabilized, Sean made the decision to transfer his care to Memorial Sloan Kettering Cancer Center (MSK), a nearby NCI designated Cancer Center, where he could benefit from the latest advances in melanoma care and have access to clinical trials.

At MSK, Sean’s care would be managed by MRA-funded investigator and advisor Jedd Wolchock, MD, PhD and his colleague Margaret Callahan, MD, PhD. They agreed he should begin his post-surgical treatment with Gamma Knife radiosurgery, which uses highly focused radiation to kill cells, targeted at the site of his tumor.

As he waited for his first treatment, sitting amongst the other people who were also waiting for their radiation therapy, he had an epiphany: “I realized I was sitting next to kids who were going through this too,” says Sean. “Kids who hadn’t lived long enough to steal a cookie. I decided right then and there that I wouldn’t feel bad about myself anymore.”

A second moment like this happened shortly thereafter as Sean recuperated at his parents’ house. He was watching a speech by Inky Johnson, a University of Tennessee football player, whose career was cut tragically short in an accident that left his right arm paralyzed.

In a famous speech by Inky, he reminds listeners that when facing any obstacle, whether it’s paralysis, cancer, or something more mundane, it’s important to remember that we do nothing alone. ‘It’s not about you’ became a rallying cry for millions – and this sentiment truly resonated with Sean.

“It helped me realize that I had people to be here for – people who depend on me – and that giving up without a fight was no longer an option,” remembers Sean.

Beginning Immunotherapy & Being Diagnosed with LMD

With this newfound perspective, Sean began treatment with combination immunotherapy. However, despite this aggressive therapy, he still was having seizures. A lumbar puncture offered more bad news: in addition to stage 4 melanoma with brain metastases, he also had leptomeningeal disease (LMD).

Leptomeningeal disease (LMD), cancer in the cerebrospinal fluid (CSF) and the membranes that surround the brain and spinal cord, is a devastating complication seen in approximately 10 – 15% of patients with advanced melanoma.¹ Despite treatment advances, survival in patients with LMD has not significantly changed in decades and is typically measured in weeks to months.² Identifying effective treatment options to address this unmet need is one of the highest priorities of MRA’s grants program.

“I was devastated,” remembers Sean.

Not ready to throw in the towel, Sean met with Drs. Callahan and Wolchok to discuss his options. Both doctors made clear that they don’t see much success in treating patients with LMD but were willing to see what they could do.

After genomic testing – sometimes called biomarker testing – it was determined that Sean’s melanoma had a BRAF mutation. This made him eligible for an additional class of medications called targeted therapy that specifically exploit a mutation in the BRAF protein.

He started dabrafenib + trametinib and tried to get back to regular life. As part of this, he decided to travel while he could. First a cruise with his parents and then an organized “death tour” consisting of various trips across the country with his buddies. Together, he and his best friends visited Las Vegas, Denver, Dallas, and Los Angeles.

At his next appointment at MSK, his care team suggested adding nivolumab (Opdivo) infusions to his daily targeted therapies. The next morning as Sean looked in the mirror after his first infusion, he was alarmed. His fire engine red beard was already getting prominent white blotches.

When he called MSK to report this seemingly odd side effect, Dr. Wolchok seemed pleased. He told Sean that this was an early indicator that the therapy was working and was good news for Sean and his prognosis.

Finding Purpose & Giving Back

Soon, he was cleared for exercise and the self-described gym rat began a yoga practice. “I never expected to find this relaxing, but it was exactly what I needed,” says Sean.

He also decided to use what time he had left to make a positive impact in his community. For Sean, this could only mean one thing: football.

“Being a football coach helped me keep my mind sharp,” says Sean. “It gave me a routine, got me out of the house, and most importantly it gave purpose.”

He poured himself into coaching – both JV and Varsity – and realized that he loved it. However, it was not always easy. “I remember this rainy Friday morning game that was happening just a few blocks away from MSK where I was getting my nivolumab infusion,” says Sean.

When Sean arrived at the wet field, the first thing he did was run over to the porta potty. He regularly experienced episodes of intense diarrhea after receiving his infusion – and today, game or not, was no exception.

After cleaning himself up, Sean headed out to the field where the kids were warming up. After getting settled, he noticed a group of his players weren’t committing the way he’d trained them. He yelled at them – “What are you doing?”

The response floored him: “Coach, it’s raining. We don’t want to get our gloves wet.”

“I just lost it,” he remembers. “Here I was, just hours from an infusion chair and making regular sprints to the porta potty and they’re complaining about getting their gloves wet. I ended by just shouting, ‘What’s your excuse?’”

Sean’s team may have lost the game, but the players had gained a new found appreciation for what true adversity looked like.

At the next practice, just days later, the entire team was sporting new t-shirts emblazoned with their bulldog mascot and a black ribbon. The text, “Coach Wachter Strong – What’s Your Excuse” proudly across the back.

“To say that I was touched is an understatement,” says Sean. “My sunglasses could only do so much to keep those tears private.”

Finding Life & Love Despite Melanoma

As the football season wrapped, Sean’s melanoma – while still there –  was stable. He was still testing positive for LMD – but wasn’t experiencing any undue side effects. At the moment, his treatments were holding their own against melanoma.

His parents, in an effort to encourage him to look to the future, urged him to get back out there and start dating.

“I ran into a lot of people who couldn’t handle me and my medical needs,” says Sean. One day, he saw an old high school friend on a dating app. He swiped right, but she must have swiped left.

Undeterred, he looked her up on Facebook and decided to message her. “We ended up talking that first time for over six hours and went to lunch the next day.”

She’d recently finished a difficult divorce and had found Sean’s posts about his melanoma journey inspirational.

Soon thereafter, they moved in together. She asked Sean to help raise her daughter and to become a family.

“I have done – and will do – many cool things in my life,” says Sean. “But helping to raise that little girl is what I’m most proud of. Without them – I’m not sure I’d be here.”

Building a Life of Intention and Being Declared NED

Life – and his monthly infusions – continued throughout 2018. By the end of the year, scans showed significant regression in the size of his tumors while others had completely disappeared altogether.

He kept on his monthly infusions throughout 2019 and by mid 2020 he and his treatment team decided the time was right for a treatment vacation. Fresh scans showed that tumors were still regressing and surprisingly a lumbar puncture showed no signs of LMD. His doctors decided to permanently discontinue immunotherapy, but keep the targeted therapy pills he took each day.

Six months later, another lumbar puncture had the same result: No LMD.

By February 2021, he was able to ring the bell after 120 rounds of Opdivo. By September, with continued tumor regression, his targeted therapy medication doses were halved.

At his next checkup in March 2022, his care team decided that it was time to discontinue therapy altogether.

“I was nervous about getting the results from my first scans without therapy,” says Sean. “The call actually came through when my wife, daughter, and I were on our way to see a WWE wrestling event. Not only did I have no progression, but the tumors were still getting smaller. I felt like I’d won everything and celebrating it with the people most important to me was exactly what I wanted.”

Today, Sean visits MSK every six months for regular scans. He also participates in several observational clinical trials to help researchers understand more about his unheard-of recovery.

He also has become an advocate for Memorial Sloan Kettering and research more broadly. He has raised thousands of dollars for various cancer organizations and is getting back to hobbies that bring him joy, like wrestling.

In fact, Sean was able to return to his true passion of professional wrestling. He now uses wrestling as a platform to show other cancer patients and survivors that there is life during and after cancer.

He was given 12 weeks to live over five years ago. Today, Sean and his scans show no evidence of disease (NED) and in October 2023, his youngest daughter was born.

“Despite everything, I feel like I’m living a full life,” says Sean. “Melanoma took a lot from me, but it also gave me so much and humbled me in ways I can’t even begin to describe. It changed my life for the better – and, at least to me, was worth it.”