Marit Liv Peterson was born in Dallas, Texas in 2004 into a loving family. Her cancer story began as an infant. Her tumor first appeared on her right ring finger when she was three months old, but doctors felt it wasn’t anything concerning. Her mom finally convinced a surgeon to remove the growth which looked like a number 2 pencil eraser. The biopsy took months to get a final answer. And, just before her second birthday, Marit was diagnosed with stage IIIB melanoma. A melanoma diagnosis at her age was unheard of, and she became the youngest melanoma patient that MD Anderson Cancer Center had ever seen. Marit was given just six months to live. 

The year was 2006, and there were not a lot of treatment options at the time, especially not for a pediatric patient. Marit’s wonderful team of doctors did everything they could to ensure that she would survive beyond her second birthday.  

After many surgeries to remove her tumor and 17 lymph nodes, Marit was declared “cancer-free.” She started a year-long alpha interferon treatment plan to ensure that her melanoma would not return. She had a Broviac port in her chest for the month-long induction phase of treatment, then her mom had to give her three shots a week for a year. This treatment made her very sick: no appetite, high fevers, hair loss, dry skin and night terrors.  

After a difficult year of treatment, Marit began a life-long journey of remission, and she will be seen by MD Anderson every year for the rest of her life. The thing about melanoma is that it can always come back. Because of this, Marit makes a point to wear sunscreen every day, limit her time in the sun and always check her moles.  

As she has gotten older, Marit discovered that this awful thing called “cancer” can lead to a passion. She has learned to educate her peers about skin safety and motivate them to protect themselves to prevent melanoma. Marit is now in her third year of undergraduate at the University of Texas at Austin with a dream of becoming a dermatologist, so that she can educate about skin safety, give people confidence on the outside and ensure that no one else has to go through the same thing that she did.   

In February 2020, my husband Austin was first diagnosed with Stage 2 Melanoma at 29 years old, about a month before our wedding. It had been several years since he had gotten a skin check and there was a mole on his forearm that he noticed had been changing in appearance. After a quickly scheduled surgery and a clear sentinel lymph node biopsy, he was back to being cancer free with a small crater left in his arm as a gentle reminder to wear sunscreen, cover up and get his regular skin checks. With all the wedding prep chaos, I really don’t think we had the time or mental capacity to comprehend that Austin was a cancer survivor.

Fast forward through the wedding, COVID, buying a house and having a baby girl, to April 2023. Austin was diagnosed with Stage 4 Melanoma after having 2 lumps biopsied by his dermatologist. He had been diligent about getting regular skin checks, but unfortunately these lumps ended up being lymph nodes and before we knew it we were looking at a PET scan that showed a tumor in his lung. We honestly hadn’t given much thought to the prospect of his cancer returning, as his prior stint seemed to end as soon as it began. Nothing can prepare you for hearing a loved one has advanced stage cancer, but the fact that Austin was so young and we had just settled into this new chapter of our lives just made it all the more crushing.

Next, we immediately started immunotherapy. Austin had two doses of Yervoy/Opdivo with great results, but ultimately it caused hepatitis so we had to stop and let him recover from that. We then tried Opdivo alone, but it caused colitis and hepatitis. Together with Austin’s Oncologist at UCSD, in January 2024 we decided we would take a break from immunotherapy since Austin’s tumor had remained stable for a number of months despite the intolerances and inconsistent infusions. The plan was to get periodic scans to keep an eye on things and continue the conversation around what the next move was going to be.

Austin and I, along with his dad, decided to take the opportunity to go to Washington D.C. in February to attend the MRA Patient Forum. We thought it would be an amazing opportunity to meet other patients, caregivers and oncologists, learn more about this disease and just take a trip while Austin was feeling well.  Melanoma had seemed to start touching every part of my life at this point, as my brother was diagnosed with Stage 1A Melanoma in August 2023 which has added a new layer of concern for my daughter as well. TIL therapy had been approved by the FDA right before the conference so it was definitely the hot topic; little did we know that was the option we didn’t know we needed.

While we were in D.C. Austin felt a hard lump in his abdomen. When we got home, tests showed that the cancer had spread to his GI tract and his brain. It had been almost a year since Austin’s Stage 4 diagnosis and it was devastating to feel like everything Austin had been through up until that point felt like it was for nothing. Cancer is cruel like that I suppose. After one round of brain radiation, he is now on BRAF/MEKi targeted therapy and waiting for that to run its course, at which time we will proceed with TIL therapy.

Austin’s journey has felt like a long one, and I’m not sure I see the light at the end of the tunnel just yet, but I am profoundly grateful for the researchers, oncologists, melanoma warriors, caregivers and organizations like the MRF for giving me hope that we can beat this disease.

Austin’s experience has underscored a crucial truth: patients need options. There isn’t a one-size-fits-all approach, and Austin has been lucky to have access to a range of treatments due to his otherwise good health prior to diagnosis. The importance of spreading awareness about skin cancer and its prevention cannot be overstated. Early detection and prevention are game-changers, and I hope our story highlights the critical need for regular skin checks and sun safety. By sharing our experiences, pushing for better treatments, and supporting each other, we can make a significant impact and improve outcomes for everyone affected by melanoma.

To all of the melanoma warriors and caregivers out there – I see you. I see the strength you muster every day, the resilience you show in the face of challenges, and the unwavering support you offer to your loved ones. Whether you’re undergoing treatment, managing side effects, or supporting someone through their fight, your dedication and perseverance are nothing short of extraordinary.

During September, I often see the hashtag #morethan4 being used. #morethan4 refers to the 4% of federal funding for all cancer research that is designed to be spread across all types of pediatric cancer. 4%.

Research advances for pediatric melanoma have greatly benefitted me in my own journey. When I was first diagnosed with melanoma, there was only one treatment option. Imagine how scary this thought is that if this doesn’t work, there’s not much else that can be done. Just two years later the unthinkable happened and I had a recurrence, but then learned there were more options for treatment. Having these options was only possible thanks to the research that happened for pediatric melanoma treatment.

When it comes to treatment for pediatric melanoma (and other pediatric cancers) the treatment isn’t as simple as a smaller dose of whatever has been approved for adult use. Pediatric treatment needs its own research done and trials conducted, even if it’s a drug that is already approved for use in adults. This is why there is a greater need for funding for this research than 4%.

Advances in research thanks to additional funding brought forth through advocacy and awareness have made all the difference in my journey as well as others.

Each year, nearly 100,000 adults are diagnosed with melanoma. In contrast, fewer than 500 children are diagnosed with melanoma each year, despite it being the primary skin cancer in pediatric patients. Since melanoma occurs most frequently in adults, much of the research and literature has been focused on adult patients. As a result, we have thorough and comprehensive measures to assess, diagnose, and treat our adult patients. We do not, however, have the same standardized processes for children and teenagers diagnosed with melanoma. This in turn results in longer times to diagnosis, delays in treatment, and sometimes worse outcomes for children and young adults. Our research is aimed at remedying that.

There are many factors used to describe and identify a melanocytic lesion. These include its location on the body, how long it has been there, and its color.  An additional factor is the patient’s age: pediatric melanoma does not often look the same as adult melanoma. Also, many patients and providers are not aware that pediatric patients can get melanoma. Because of these challenges, pediatric melanoma is often caught late and once it is diagnosed, doctors are often unsure about the best ways to proceed with treatment. We know that catching melanoma early and initiating treatment as soon as possible is crucial to positive outcomes in patients, making such delays detrimental.

To work towards standardizing care for children with melanoma, we need an understanding of the biological mechanisms of the disease in children and how this compares to adults. The goal of our research is to discover and understand such biological mechanisms. One mechanism by which cancer cells grow uncontrollably is by preventing their DNA’s protective caps, called telomeres, from getting shorter as they should with each cell division. Our team will explore the role of specific genetic mutations within the telomeres and their binding proteins in pediatric and adolescent melanoma patients.

To do so, we are studying information from pediatric melanoma patients cared for within the Pediatric Melanoma Program at the UPMC Children’s Hospital of Pittsburgh. We believe that with a better understanding of the biological mechanisms of pediatric melanoma, we can work towards faster recognition and treatment of the disease in children. This is pivotal to improving our care for children and teenagers diagnosed with this disease. The earlier we catch the disease, the better the patient’s outcomes. We are dedicated to improving the outcomes of every young patient diagnosed with melanoma.

In November 2008, I was diagnosed with choroidal melanoma in my left eye and had some decisions to make.  I met with my retina specialist and oncologist, and I was given three options.  1.  Do nothing and hope it wasn’t cancer. 2. Enucleation and 3. Plaque therapy.   At this time a biopsy was not available, and research had shown that when the tumor started growing, 90%+ of the time, it was cancerous.  I went through all the options and decided to get the plaque done.  My insurance initially denied my surgery because they had never heard of a tumor in the eye before!   

On January 7th, 2009, at age 44, I had Plaque therapy and my journey really started.  It was completely different than what I expected, but I had a wonderful care team and supportive family.  I had lots of questions and not many answers, but I had to have faith.  I really did not understand the seriousness of choroidal melanoma until the surgical staff explained how critical it was to not have cancer spread to my liver and recently, they had two patients with similar tumors pass away due to liver metastasis.  This is real. 

My surgery was very uneventful, and I was amazed at how quickly the eye heals. I was back to work in about two weeks with minimal side effects. I lived a very normal life for about 12 years with just some irritation in my OM eye and a little reduced vision.  I would get a shot of Avastin now and then and that really helped.   

In December of 2022, I lost quite a bit of vision in my OM eye due to radiation retinopathy and my vision went to 20/400 in that eye.  This was quite a change for me, and my retina specialist recommended I get in touch with the Melanoma Research Foundation.  I attended my first zoom support group in Feb. 2023 and my life really changed.   Although everyone’s journey is different, these people understood what I was going through, and provided the support I so badly needed.  I lost my wife in the pandemic and was still struggling with that, and now here is a group of people who really care about a disease that isn’t talked about very often. 

I learned about local and national resources that are helping me live life to its fullest and taking the fear of the unknown away. With some greatly appreciated assistance from MRF, I was able to attend the patient and caregiver’s symposium in Boston this year. I met people from the zoom support group, other patients and caregivers and even research scientists working on a cure!   During a dark time of my life, these caring people and MRF changed my attitude and have given me hope! I have people to reach out to if I’m having a bad day and people, I can help to take the focus off me and give back.  That may sound selfish, but it makes such a positive difference in my life.   

There are so many people I am grateful for, and the only way I can give back is to help others with a kind ear, listen, stay positive and volunteer when the opportunity arises. 

As others have said, there is no reason to go through this alone and you don’t have to!   I have a much better understanding of ocular melanoma, and my care team even has plans if I need any further treatment.   None of us know what tomorrow will bring, but I start each day knowing people care about me, and everything will be okay.  That’s all any of us really have. 

The Melanoma Research Foundation joins the melanoma community in expressing our profound condolences on the recent passing of Jeffrey S. Weber, MD, PhD. Dr. Weber was an internationally recognized and trailblazing pioneer in cancer immune therapy and melanoma and made countless contributions to these fields throughout his remarkable career. As an immunotherapy expert, Dr. Weber’s investigations and research findings have brought innovative advancements in melanoma treatment from the laboratory to clinical practice. Collectively, Dr. Weber’s contributions have greatly impacted the entire melanoma community and have enabled tremendous progress for countless patients, survivors and caregivers.   

Dr. Weber was the esteemed deputy director of the Perlmutter Cancer Center and codirector of the Melanoma Research Program at NYU Langone Health. Prior to this most recent role, Dr. Weber also held leadership positions at H. Lee Moffit Cancer Center and USC’s Norris Comprehensive Cancer Center. He was a recognized leader in forging collaborative partnerships between basic scientists and clinical and translational investigators to advance cancer care. Throughout his decades long career, Dr. Weber led multiple practice changing clinical trials including the CheckMate 238 Phase III adjuvant nivolumab trial in stage III melanoma that established the first adjuvant use of anti-PD-1 antibodies. He also presented on the randomized Phase II trial of pembrolizumab and a personalized mRNA cancer vaccine compared to pembrolizumab alone in patients with melanoma. This was a landmark study in showing the first time randomized clinical data supporting the efficacy of a vaccine in preventing cancer relapse.  

The MRF is incredibly honored and indebted to Dr. Weber for his many years of service to our community. In 2021, Dr. Weber helped produce a series of Animated Patient Videos that helped synthesize a variety of melanoma topics such as understanding, diagnosing and treating melanoma, an overview of genetic mutations of melanoma and TIL cell therapy and clinical trials for melanoma. This series continues to benefit melanoma patients, caregivers and survivors across the spectrum of their melanoma journey. In addition to his countless contributions to the melanoma patient community, Dr. Weber also helped steer the melanoma scientific community having served on the MRF’s Scientific Advisory Council and its Breakthrough Consortium – a network of 23 centers of excellence in melanoma that collaborate to accelerate the research and development of the most promising therapies in melanoma treatment. Dr. Weber served as an MRF grant reviewer and grant mentor and reviewed patient education materials. In 2019, the MRF honored Dr. Weber with its Humanitarian Award at that year’s New York City annual gala for his exceptional contributions to melanoma detection and treatment.

MRF’s Board Chair, Doug Brodman, offers, “It is with great sorrow that we have heard of Jeff’s passing. Jeff was a passionate doctor and researcher who had an immeasurable impact on the melanoma field. His work had an enormous impact on the survivorship of many melanoma patients, including myself. His legacy and work will carry on with all those he has touched personally through his career’s work.”

Our deepest condolences are extended to the family, friends, colleagues and patients of Dr. Weber’s and the countless cancer community members whose lives have been touched by his inspirational contributions.

Neoadjuvant vs. Adjuvant Therapy 

As part of the plenary session, the results of the NADINA trial were presented.  This multicenter phase III trial addressed the question of whether neoadjuvant, or pre-surgery, treatment is more effective than adjuvant, or post-surgery, treatment (which is the current standard of care) in preventing recurrence in resectable (removable by surgery), macroscopic (visible to the naked eye) Stage III melanoma patients.  Eligible patients were randomized to receive either neoadjuvant ipilimumab/ nivolumab (ipi/nivo) followed by surgery and additional adjuvant therapy if needed versus surgery followed by adjuvant nivolumab.  Results showed that neoadjuvant treatment followed by surgery and response-driven adjuvant treatment resulted in an increased event-free survival (EFS) benefit over standard of care surgery/adjuvant therapy alone in this patient population. As ASCO posted, NADINA: Neoadjuvant Ipilimumab Plus Nivolumab Poised to Become a New Standard of Care for Macroscopic Stage III Melanoma (ascopubs.org).  As noted in this article, this trial was a pioneering study as it “is the first phase 3 trial in stage III melanoma to evaluate neoadjuvant immunotherapy against adjuvant therapy, a current standard of care…it is the first trial on melanoma to adapt administration of adjuvant therapy based on response…and it is the first phase 3 trial in all of oncology to evaluate a neoadjuvant regimen consisting solely of immunotherapy alone without additional chemotherapy.” Results were published in the New England Journal of Medicine and the principal investigator talks about his work on The ASCO Post. 

Immunotherapy 

Immunotherapy is a type of systemic (whole body) therapy that attempts to treat the patient by activating their immune system so that it will destroy any melanoma cells within the body.  At the ASCO meeting, several presentations focused on various melanoma immunotherapy trials.  Some highlights included: 

Triplet Immunotherapy

As background, currently nivolumab is approved by the Food and Drug Administration (FDA) as both a single agent alone or in combination with relatlimab or ipilimumab for various melanoma indications.  In this phase 1/2 non-randomized trial (RELATIVITY-048), the investigators wanted to test the efficacy and safety of various triplet combinations, including nivolumab, relatlimab, and ipilimumab, in advanced melanoma patients. As ASCO posted, Triplet Immunotherapy Shows Promise in Early-Phase Trial of Untreated Advanced Melanoma (ascopubs.org). However, as this was such a small study, additional studies will need to confirm the results as well as identify the appropriate dosing schedule to ascertain if the long-term benefits outweigh the potential of increased toxicities. 

TILs+Pembrolizumab

Lifileucel was recently approved by the FDA for the treatment of adult patients with cutaneous melanoma that is inoperable or has metastasized. Lifileucel is made by using immune cells called tumor-infiltrating lymphocytes (TILs) from the patient’s tumor. In this small cohort from the IOV-COM-202 trial, investigators were assessing the use of TIL therapy plus pembrolizumab (pembro) in front-line advanced melanoma patients. As ASCO announced, TIL Therapy in Combination With Pembrolizumab Shows Promise in Patients With Immunotherapy-Naive, Advanced Melanoma (ascopubs.org).  This regimen is being further studied in the larger phase 3 TILVANCE-301 trial. 

To learn more about how TIL Cell Therapy treats melanoma, please view the MRF’s Animated patient video on TIL Cell Therapy here: Animation – TIL Cell Therapy for Melanoma (youandmelanoma.com) 

Novel Engineered Protein

For some context, this trial uses a novel type of engineered protein, immune-mobilizing monoclonal T-cell receptor against cancer (ImmTAC), altered to recognize the cancer antigen, PRAME (the immunotherapy is referred to as brenetafusp).  This specific treatment can only be used in patients whose tumors express HLA-A*02, or a human leukocyte antigen, which is a marker some cells in the body have that is determined through a blood test.  In this small phase 1/ 2 trial, Early Data Support the Safety and Efficacy of a Novel Engineered Protein for Advanced Cutaneous Melanoma (ascopubs.org).  In patients that were PRAME positive and received this agent, there was a doubling of progression free survival and overall survival. This work is being further studied in the larger phase 3 PRISM-MEL301 study, which compares brenetafusp plus nivo to nivo alone in HLA-A*02:01 positive patients with previously untreated advanced melanoma. 

Oncolytic Immunotherapy

This phase 1/ 2 trial (IGNYTE) tested the agent RP1, an oncolytic immunotherapy (or a cancer treatment that uses viruses to break open cancer cells in a process known as oncolysis), in combination with nivo in advanced or metastatic cutaneous melanoma patients who progressed on anti-PD1 therapy.  The data showed durable and clinically meaningful response rates. OncLive summarized the findings in a brief article, New Data with RP1 Plus Nivolumab in PD1 Refractory Melanoma Build on Positive Findings. 

Vaccines

Previous results have been presented/published for the phase 2b, KEYNOTE-942 trial showing that patients with completely resected high-risk stage IIIB-IV cutaneous melanoma receiving an adjuvant mRNA vaccine (mRNA-4157) plus pembro had prolonged recurrence-free and distant metastasis-free survival compared to those patients that received pembro alone. These results generated much excitement in the field, including articles such as this one by Medscape entitled Coming Soon: the First mRNA Vaccine for Melanoma? At ASCO this year, the investigative team reported data for these patients at ~3 years after treatment, showing continued durable long-term recurrence-free and distant metastasis-free survival benefit with the combination. A larger, confirmatory phase 3 trial (V940-001) is under way. 

Targeted Therapy 

Targeted therapy is a form of treatment in which drugs (or other substances) are developed with the goal of destroying cancer cells while leaving normal cells intact. These drugs are designed to interfere with the specific molecules that are driving the growth and spread of the tumor. Because they are “targeted” to the tumor, these therapies may be more effective and associated with fewer side effects compared to chemotherapy and radiation therapy. A targeted therapy approach allows the classification of melanoma into different “subtypes” based on the genetic profile of the tumor. 

Sequencing of Agents

The results of the DREAMseq trial (published in the Journal of Clinical Oncology) indicate that immunotherapy should be given prior to targeted therapy for treatment-naïve BRAF mutant metastatic melanoma patients. However, the EBIN trial presented this year at ASCO, suggested that patients with significantly elevated LDH or those with liver metastases may benefit from receiving induction treatment with targeted therapy (of encorafenib/ binimetinib) prior to immunotherapy (with ipilimumab/nivolumab). ASCO summarized the findings in: Encorafenib/Binimetinib Induction Improves PFS in Some Patients With Advanced BRAFV600E/K–Mutant Melanoma (ascopubs.org). 

Adjuvant Targeted Therapy

As background, dabrafenib plus trametinib are considered a standard of care adjuvant treatment option for BRAF-mutated stage III cutaneous melanoma. At ASCO this year, the final results of the COMBI-AD phase 3 trial at 10 years after treatment initiation were presented. In this study, patients receiving adjuvant dabrafenib and trametinib vs a placebo showed improved overall survival, and a more favorable recurrence-free and distant metastasis-free survival.   

Rare Melanomas 

Wrapping up our coverage of ASCO 2024, we wanted to highlight three trials focused on uveal melanoma that were presented during the rapid-fire melanoma oral presentations. The first was a phase 2 multi-center trial of adjuvant ipilimumab/nivolumab in high-risk uveal melanoma patients. The data showed promising improvement in 3-year distant metastasis-free survival warranting further investigation of this therapy. In the second phase 2 study, uveal melanoma patients were treated with neoadjuvant darovasertib prior to definitive management (enucleation, radiation therapy, etc.). This study concluded that neoadjuvant treatment is feasible and safe; further, the agent induced clinically meaningful tumor shrinkage in some patients. A larger trial is currently underway. The last trial used the agent RP2, an oncolytic immunotherapy agent, alone or in combination with nivolumab in previously treated, metastatic uveal melanoma patients. The results were promising in both arms and a larger trial is being planned.  

For questions related to melanoma clinical trials, please watch the MRF’s Animation – Clinical Trials in Melanoma (youandmelanoma.com) 

In the beginning of my treatment, I really did not share much about my cancer with anyone except my family and a few close friends. I was being self-reliant and did not want to be pitied. I was scared that work would think I was something less and move me to the sidelines. Does that approach sound familiar to anyone? 

Fortunately, two very important things happened to teach me a better way.  First, I joined the MRF support group that meets monthly, and I went to an outdoor adventure camp for cancer survivors. In both settings there was an emphasis on small group discussions. I met others who faced similar challenges in their treatment and found out that many of my feelings were not uncommon at all! Here were folks who understood everything I felt and did not find me crazy for having those thoughts. More importantly, I also learned from others journeys ways to make mine a little easier as well as share my own experiences. It is in these small group settings and discussions that we share our experiences and strengthen each other for what is next. Shared resilience, for me, means drawing on the collective strength and wisdom of those who also walk this path alongside me, making each step forward a testament to our united spirit. Another thing I learned at MRF meetings and outdoor camps is that the best way for me to go forward is to live in the present! There was a character in a TV show who had a terminal illness who had a line where he said, “…. you know if I focus on what bad things may or will happen in the future, I will miss the joy of what’s happening right now.”  I liked that a lot. I love being outside and doing things in nature (hiking, rafting, fishing, biking). Doing these things is when I enjoy life best, so I do them more often than before cancer. Maybe not as aggressively or fast as before, but I am out there. I am enjoying the now with my loved ones. It’s kind of an awesome way to live, cancer or no cancer.  I never would have learned this way of resilience had it not been shared in the small groups of MRF or camp activities. 

Embracing the present moment has not only allowed me to cherish the beauty of nature but has also connected me with a community of support, reinforcing the shared resilience that sustains us all.

The overall survival of patients with melanoma drastically improves with a type of treatment called immunotherapy (IO), which activates the body’s immune system to fight cancer more effectively. However, despite many recent advancements in IO development, such treatment fails many patients. Tumor infiltrating lymphocyte (TIL) therapy represents a promising approach for the treatment of melanoma patients whose disease does not benefit from conventional immunotherapy agents. Initial promising studies led to the TIL therapy approval by the US Food and Drug Administration for previously treated patients with unresectable or metastatic melanoma. In the current practice patients undergo surgery and collected tumor from a patient during surgery is used for TIL growth in the laboratory. After TILs grow billions in number and meet all criteria for release, they are infused back into the patient to attack the cancer cells.

This study investigates whether TILs can be successfully grown from core needle biopsies rather than surgical samples. Patients receiving a core needle biopsy as part of their clinical care will have additional passes of the needle into the tumor. This procedure is usually being done by interventional radiologist under imaging guidance and does not require any open surgery. The tissue removed from the tumor by a hollow needle, called core, is then grown in laboratory. Additionally, this study investigates how specific pathological and immunological characteristics of tissue impact quality of generated TIL. Finally, we use additional molecules along with interleukin-2 in the laboratory to support growth rate of TIL and number of “good” lymphocytes in the TIL product. We believe that this work will lead to a novel approach in optimizing TIL growth from patient core biopsy samples which may facilitate and improve TIL therapy outcomes including providing better quality of life for patients and the avoidance of surgical excision. This study also provides an opportunity to optimize growth from unresectable lesions, which would otherwise be considered as non-harvestable tumor sites which would disqualify patient’s accrual on TIL-based therapy trials or standard of care TIL therapy. From a tiny piece of tissue, smaller than a grain of rice, millions of TILs can be grown in a month!

My name is Jamie Tomasko and my story began in 2012 with just a small spot on my left shoulder.  I had a biopsy performed and it came back as melanoma, which was ultimately removed at Moffitt. Without any further thought, two years later I started noticing what felt like a bb under my skin. These areas started to grow larger and multiply, so I made an appointment with my dermatologist who sent me to a specialist to have another biopsy performed on one of the lumps. The biopsy revealed that I was again dealing with melanoma and I immediately made an appointment with Moffitt that same day.

We met with the medical oncologist who started the ball rolling. First, they did a PET scan, which to this day is the only PET scan I’ve had since being diagnosed. That PET scan revealed that the melanoma had metastasized to several other places in my body. My wife and I were brought into the medical oncologist office and told about the results; I had stage 4 metastatic melanoma. To say we both were speechless and numb is an understatement. The fact that I had this cancer didn’t seem like a priority as I immediately started thinking about my family and everything I would need to do to make sure they were taken care of when I was gone, but I had to focus on what the oncologist was saying. He gave us two options for clinical trials depending on the outcome of my BRAF test, both of which were TIL trials at Moffitt with Dr. Sarnaik. I was almost unable to partake in a clinical trial because I had my prostate removed just two years prior due to prostate cancer, but thankfully, I was just over two years with no evidence of recurrence.

So now the testing begins – the BRAF came back as BRAF wild, with this result it was decided that I would be enrolled in the clinical trial 17057 which is Ipilimumab + adoptive TIL therapy and high dose IL2. Once all testing was done and I was cleared to begin the trial, I was given the first of four doses of lpilimumab and two weeks later they were going to take a biopsy of one of my largest tumors which would be used to grow the TIL. When it was time to have the biopsy of the tumor after just one dose of Ipi, it had shrunk so much they were afraid that they would not be able to biopsy this area. Just one dose! It was a great feeling to know this was working on me already. I had a tunneled central line placed for the chemo, so it began with apheresis and the lymphodepleting chemo which depleted all my t-cells and forced me to wear a mask and be careful around others since I was now more prone to infection.

I was admitted to the hospital under the care of Doctor Sarnaik. This man is incredible. I was his only patient and he was either at the hospital or on the phone no matter what time it was. I had the absolute best nurses on all shifts and having a team like this truly made going through this so much better. When it came time to infuse the TIL, I was told that they had grown 94 billion new cells, which still amazes me. They started the IL2 after the infusion of the T-cells. I initially received 4 doses of IL2 and at the time, it was still unknown just how many would be needed. I wanted to keep going but Dr. Sarnaik stopped due to Pulmonary Edema and other issues. I spent just seven days in the hospital before I was ready to get back to work and during all the other treatments and testing, I didn’t miss more than a week of work aside from the time I spent in the hospital. Once I finished the treatment, Initially I was going back every 3 months for scans, and then it was every 6 months and now just once yearly for a check-up. I have not had any new tumors and most of the tumors they have been following have either shrunk to almost nothing or reduced to just scar tissue. I am now at 10 years and still feel great because of my super immune system.

I cannot say enough about the entire staff at Moffitt, all my doctors and the nurses who looked after me. Without them all, I know I would not be here right now.