Trena’s Story: An African-American Retiree’s Journey with Melanoma

“Trena, you have melanoma and you are going to lose your toe. “  WHAT?!?!

I am a Black woman in her sixties—that is crazy!!

TB and Boyfriend

Trena with her boyfriend, Maceo.

My name is Trena Brown. Retired from corporate life, I was in the process of travelling to places on my bucket list when in March 2013, I learned that the “blister” on my great right toe was not a blister. It revealed its ugly bubble near the toenail, near a spot that had previously been excised in 2011 because of severely darkened skin in an irregular pattern.  However, the biopsy results were benign and the margins were clear so “I’m good!” So how is it possible that I had melanoma?  My doctor was explaining it all to me but I was not hearing anything except my own wild sobs and screaming.

Two weeks later with a cast up to my knee I am grateful for my family, neighbors and friends who are helping me literally get back on my feet. Some people had no clue what the word melanoma meant and thought I had an amputation due to diabetes. Others thought that melanin not only beautifies skin, but protects it. So why would this happen to any of us with lots of melanin?

TB Group

Trena (center) with her family.

After the amputation, my doctor had used the same words again…”the margins were clear”….and this time surely they were, since I no longer had a big toe.  I relegated myself to visiting my reconstructive surgeon, my dermatologist, and my oncologist every three months. In six months, I was able to take a pre-scheduled trip to China, and in a year, I was back in my Zumba class, seeing my trainer at the gym, and enjoying dancing at parties again. “I’m good!”

In December of 2015, I told my PCP that sometimes when I was outside, I seemed to have labored breathing.  He suggested I stop downstairs on my way out and get a chest x-ray. In the following days, my doctor told me I needed both a CT scan and lung biopsy.

In 48 hours after the biopsy, I got a message from MyChart, saying I had “test results.”  With my brother and sister-in-law on the phone for support, I opened the results to see the entire page filled with print, but my eyes focus on the line in the center that had two words in bold print:  Metastatic Melanoma.  My brother was talking to me but all I could hear were my own wild sobs and screaming.

TB Sister

Trena (R) with her sister-in-law, Aileen.

Three years ago, there was no cure. Surely God put angels on my shoulders because now, as I started telling friends and family about my condition and my oncologist’s recommendation for immunotherapy, I found that there were quite a few people in the clinical trials who had amazing success.  A friend introduced me via e-mail to Louise Perkins who invited me to a Melanoma Research Alliance reception in Washington DC where I had the opportunity to meet several survivors.  I also talked to several doctors about their interest in melanoma and what they hoped to see in the coming years.  It was a very uplifting experience that helped me focus through the Yervoy/Opdivo drips and envision a positive outcome where “I’m going to be good.”

In May of 2016, I had CT scans to determine my progress after starting immunotherapy in February. Because I had not experienced any symptoms throughout my immunotherapy, I always considered that I was improving. If President Carter could beat this at his age then I surely should be able to.  Later that day, I finally get a call from the doctor with words I actually can hear:

“Trena, you have had outstanding results from your immunotherapy!  The nodules have shrunk to be miniscule and the swollen lymph node is a normal size”. 

YES!!!  No screaming, no sobs, just tears of joy!

So now I am in Phase Two—maintenance.  I continue to let people know that African-Americans can get melanoma I encourage people to check out any abnormalities on their skin, wear sunscreen, and see dermatologists.  I am only one person, but hopefully one person who can help educate my community on melanoma, and as well as the advances that are being made.

I truly believe my best days are yet to come.

Whither melanoma and whither cancer research? 

By Louise M. Perkins, PhD
Chief Science Officer, Melanoma Research Alliance

There is no doubt that the last few years have seen incredible progress for melanoma patients with 11 treatments approved since MRA’s founding in 2007: personalized medicine, targeted therapy, immunotherapy. What remains to be done for melanoma and other cancers? How are the successes in melanoma and other research areas converging on even greater progress for patients?

The answers to these questions were touched on at the American Association for Cancer Research (AACR) Annual Meeting in New Orleans in late April.

First – a quick comment on the AACR Annual Meeting itself. It is the largest meeting of cancer researchers from around the world and takes place during half a week.  In that time, there are many and various presentations covering basic cancer biology, translational research and clinical outcomes.

Image courtesy of AACR twitter account.

Vice President Joe Biden speaking at the 2016 AACR Annual Meeting. Image courtesy of AACR twitter account.

Starting with the opening plenary session (featuring two MRA-funded researchers) and throughout the meeting, one couldn’t help but notice how melanoma remains as the premier case study for immunotherapy – treatment that is benefiting not only melanoma patients, but also lung, kidney and blood cancer patients.  There is continuous forward progress in building beyond the status quo to expand the benefit of these new treatments to many. Meanwhile, data at the meeting revealed that 1 of 3 melanoma patients who received nivolumab were alive at 5 years. Similarly, the news was good for combination immunotherapy with early data showing that two-thirds of patients treated with the nivolumab-ipilimumab combination regimen were alive after 2 years. This is amazing!

But challenges remain. With the increased side-effects of the combination, which patients should get single-agent vs combination therapy? And what new treatments can be brought forward for those who either never benefit or whose tumors progress despite treatment whether they have melanoma or a different cancer?  Radiation therapy, new immunotherapies, different timing of treatments, new targeted therapies, biomarkers that match patients to treatments  – all of these are under study to further improve outcomes for patients.

One last note. Treating cancer is one thing, but doesn’t it sound better to never get cancer in the first place? Unfortunately, most cancers really can’t be prevented. Outcomes are improved by early diagnosis as is the case for breast and colon cancer, but we still can’t prevent most cancers (cervical cancer is a notable exception with HPV-vaccination, by the way).  But melanoma is different and this is incredibly relevant for Melanoma Awareness month. The evidence is clear: ultraviolet light causes DNA damage leading to mutations. And melanoma tumors have the most mutations of any cancer. The pattern of the melanoma mutations is clearly due to UV exposure. Further, in mouse models predisposed to melanoma, broad spectrum sunscreen profoundly decreases the number of melanomas those animals develop. And in the absence of UV light, they get very few tumors.

In practical terms, what does this mean? Basically, use UV-safe practices! Cover up, use sunscreen liberally and avoid UV light whether from the sun or tanning beds.

To paraphrase the most interesting man in the world, “Stay shady, my friends.”


About the Author

Louise M. Perkins, Ph.D., joined the Melanoma Research Alliance (MRA) as Chief Science Officer in 2013 where she is responsible for the development and implementation of MRA’s scientific strategy.

A Daughter Reflects on Her Father’s Battle with Melanoma

By Samantha Stinchcomb

This week, we feature a guest post by Samantha Stinchcomb, a student at the University of Delaware. When her father succumbed to melanoma, Samantha and her family and friends founded the Wayne Stinchcomb Big Orange Foundation to raise money for melanoma research and to educate her local community about the disease and the importance of early detection.

Big Orange photo

Samantha with her dad, Wayne

At 13, while most girls were picking out a dress to wear to the 8th grade dance, I was busy picking out a quote for my dad’s tombstone. After 3 years full of long doctor appointments, harsh experimental treatments, extended hospital stays, little good news, lots of bad news, and hours of prayer, my father had lost his battle to melanoma.

It began in 2007 when my mom noticed a suspicious mole on my dad’s back. Starting with the initial dermatologist visit, my parents were always open and honest with my brother and me about what was happening. I can remember every single conversation we had after each doctor appointment or hospital visit. They tried to explain things as clearly as they could, but being only 13, I had a hard time understanding everything. In the beginning, it all seemed so simple: remove the mole and the cancer would be gone. I never expected we’d still be having those conversations three years later.

I specifically remember talking with my parents after they learned about immunotherapy. Considering I was struggling in my 8th grade science class, I didn’t really understand the concept. My mom tried to explain by comparing it to Pac-Man. She said the cells made in the lab would “eat away” at my dad’s tumors. It was our final option and, even though it was another experimental treatment, we had to have faith and pray it would work.

Initially, the treatment was going well. My once bed-ridden father, so weak he was only recognizable by his beaming smile, was becoming himself again. He was eating regularly, laughing a lot, and even leading my basketball team all the way to the championships as our coach. Christmas of 2009, my father had been declared three months No Evidence of Disease (NED) and my family couldn’t be happier.

However, just 10 short days later, our life got flipped upside down once more. My parents came home from a check-up completely silent. No one spoke but no one needed to; it was understood. The immunotherapy had been unsuccessful and the melanoma was beginning to attack other organs in my dad’s body. We were out of options and there was nothing else we could do. Three months later, at 12:37 am on April 27, 2010, I lost my father to melanoma.

Although not a day goes by where I don’t miss him, I now smile instead of cry because I know God chose my father for a reason. God knew who my father was, how many lives he touched in his short time here, and what those people were capable of. My parents’ friends founded the Wayne Stinchcomb Big Orange Foundation and has turned our tragedy into something amazing. Since Big Orange’s founding in 2010, there have been 11 new approved treatment options for melanoma, which we like to attribute in part to the $85,000 we’ve raised and donated to Melanoma Research Alliance. In addition to the funds we’ve raised, our advocacy and my father’s story has influenced many to get their skin checked and catch precancerous cells early.

People always say to me, “If only your father was diagnosed just one year later, he would’ve had treatment options,” but I don’t think about it like that. My dad was always the first one to try something new and the last one to give up. Whatever he did in life, he had to do it big and this rings true even for his battle with melanoma. The way I see it, my dad is one of the reasons all of these treatment options exist in the first place. Because of his journey and experiences with novel treatments, someone, somewhere is singing their daughter to sleep, kissing their wife goodnight, and waking up to a new day because they now have options when facing the monster that is melanoma.

Research Q&A: Dr. Tim Bullock

BullockIn the latest blog post, we chatted with the University of Virginia’s Tim Bullock, Ph.D., a tumor immunologist in the Pathology Department and MRA-funded investigator. Read on to learn what he has to say about melanoma research and prevention efforts.

Can you explain a bit about your research?

I received an Academic Industry Award from MRA, which was a fantastic segue from the more basic/translational tumor immunology we were well-versed in to getting me more exposed to (and appreciative of) the challenges and opportunities that are presented in clinical tumor immunology. It really helped establish our lab in truly translational research.

The grant led us to begin to understand what goes wrong with T cells in patients with melanoma. We’re conducting research now to look at the transcriptional basis of what’s wrong with tumor infiltrating T cells, looking at the genes that control T cell function, and what signals from the tumor microenvironment influence the expression of these genes. We’re trying to understand if we can identify critical differences in genes in T cells that are failing to control tumors compared to those that either control tumors or infections, so that once we understand them, they could either be biomarkers for effective anti PD-1 therapies or provide opportunities to complement anti-PD1 therapy.

We take a collaborative approach with investigators at UVA, so I value working with clinicians and researchers from a variety of backgrounds. We work in teams to look at how targeted therapies and more traditional chemotherapies affect newer immunotherapies to understand the cumulative effects of these treatments. The hope is that this will help us identifying rational combinations of tumor-targeting therapies that will work well with immunotherapies.

Can you explain how your research is helping making a difference for patients?

Our most recent funding, as an Established Investigator, uses a fairly novel technology called focused ultrasound. It’s a way of delivering acoustic energy, as opposed to the more traditional radiation, into tumors, with the intent of causing damage to the tumor that the immune system can respond to. It’s in early stages yet, so we need to understand how innate and adaptive immunity, and the tumor, respond to this type of “insult.” This is focusing specifically on melanoma brain metastases as there is such an unmet need in this patient population. We’re trying to answer important questions, like:

  • Can we use it to treat brain metastases (similarly to how it’s being used to treat Essential Tremors and patients with Parkinson’s Disease)?
  • How does the brain’s immune components respond?
  • Can we integrate this technology with immunotherapy?

There are a lot of unanswered questions, but our goal is to get it to patients as soon as possible. We’re integrating our work with biomedical engineers and have funded this collaboratively because many people see the potential for focused ultrasound. If efficacy is the same as radiation, this technology could provide a new approach meet the challenge of these poorly served patients.

How has MRA funding helped your work?

Each stage of my career, MRA has been there. The Young Investigator Award helped get my lab up and running. And the continued support through Academic-Industry Partnership and Established Investigator awards have helped sustain my work.

The funding has been important, but I also value the collaborative network that MRA has fostered. The Scientific Retreat is a relaxed setting to chat about real challenges and new opportunities.

MRA has a real enthusiasm for thinking outside the envelope. MRA provides the building blocks and foundation to get important research moving forward. MRA is notorious for that and it’s certainly had an impact on my career.

What do you hope to see more of in the future of melanoma research?

The future is understanding how to integrate these amazing therapies we have now. We’re trying to understand each patient’s disease to select the appropriate combination of therapies to treat them.  We can almost come up with a “prescription” for each patient. We’re also talking about real-time monitoring of tumors to identify mechanisms of adaptive resistance. This could allow us to develop counter responses by figuring out how to react in near real time.

This is absolutely personalized, precision medicine, and I think melanoma researchers and the MRA are going to lead it.

Can you share a little about yourself? What do you outside of the lab?

One of the things I enjoy most is coaching soccer. Right now I’m coaching U14 girls soccer.

 

 

Dateline Chicago: MRA and GRACE Immunotherapy Forum

By Louise M. Perkins, PhD

Immunotherapy Patient Forum collage

Dr. Jedd Wolchok & Rusty Cline, Carlea Bauman & Wendy Selig, Drs. Wolchok, Louise Perkins & Suzanne Topalian, Drs. Michael Atkins, Drew Pardoll & Wolchok

On Sunday October 26, MRA and its partner GRACE (Global Resource for Advancing Cancer Education) held a forum for patients/caregivers with melanoma, kidney cancer and lung cancer at the Intercontinental Hotel in downtown Chicago.  Despite the fact that it was a gorgeous day outside—warm and sunny for Chicago in late October—nearly 60 patients/caregivers attended the forum from 8:30 am to 3:30 pm.  The meeting format involved a general session with a series of talks followed by a panel discussion centered on questions from the audience. In addition, there was a lunchtime disease-specific breakout for melanoma, kidney cancer or lung cancer.  There was a lot of energy throughout the day and it was gratifying to see a full house for the meeting!

The content reflected the world-class expertise of the presenters who spoke from their various perspectives covering not only the hard-core science behind immunotherapy (Drew Pardoll) but also clinical insights offered by Michael Atkins, Matthew Helmann, Jason Luke, Sumanta Pal, Suzanne Topalian, and Jedd Wolchok.  We were thrilled to also have presentations by Rusty Cline, a Stage IV melanoma patient who told of his experience with the disease and the current success he is having with anti-PD-1 therapy and Marianne Davis, NP who gave a superb description of immunotherapy side-effects and their management.

I had the pleasure of moderating the melanoma session at which Drs. Suzanne Topalian and Jedd Wolchok spoke on what have we learned from clinical studies to date and the future of melanoma immunotherapy.  If you don’t know it, Drs. Topalian and Wolchok are true giants in the field, as well as MRA-funded investigators and strong supporters of MRA.  Dr. Wolchok heads the Melanoma and Immunotherapy Service at Memorial Sloan Kettering Cancer Center and has been involved in many ground-breaking clinical programs with anti-CTLA4 and anti-PD-1 drugs for melanoma patients. In addition to her outstanding research on melanoma and immunotherapy biomarkers, Dr. Topalian was my predecessor as MRA’s Chief Science Officer, is chair of our Scientific Advisory Panel and is an MRA Board Member. Whew!  It is awe-inspiring to be with these two and we were honored to have them there to share their insights directly with the melanoma patients in the room.

You may be thinking, “Rats—I wish I could’ve been there!”  Well, stay tuned as the entire meeting was filmed and the video should be available via our website in a few weeks.

Altogether, this was a fantastic meeting and I’ll leave you with just a few comments from the presenters that encapsulate the day. Dr. Matthew Hellman remarked that over a century’s worth of laboratory and clinical research is yielding the first fruits of significant progress in the use of immunotherapy against cancer. As Dr. Drew Pardoll stated, now is the time to re-think how we do cancer research based on major advances in immunotherapy for melanoma, lung and kidney cancers.   And as pointed out by Dr. Wolchok, this success with immunotherapy is just the beginning of the end.  We couldn’t agree more.  Let’s just make sure we keep pushing to get to the end as soon as possible.

About the Author

Louise Perkins HeadshotLouise M. Perkins, Ph.D., joined the Melanoma Research Alliance (MRA) as Chief Science Officer in 2013 where she is responsible for the development and implementation of MRA’s scientific strategy.  Her interests center on translational research with specific concentration on genomics, drug discovery and the advancement of novel therapeutic approaches. Prior to joining MRA, she was Chief Scientific Officer at the Multiple Myeloma Research Foundation (MMRF) for five years following a research career of 16 years at two major pharmaceutical companies.

Expanded Access Programs: A Time of Amazement in Melanoma

Immunotherapy Science Mag CoverFor those of you keeping a close eye on the field of melanoma treatments, you know that we find ourselves living in a simply amazing period of opportunity and innovation—even though there is still a long way to go.

The creation of new cancer drugs is pharmaceutical alchemy, transmuting a base idea into a life-prolonging new treatment that is both safe and effective.  While not magic, drug development is an expensive, incredibly complex and time-consuming process.  And when it works well—when there are exceptionally promising treatments near at hand—the wait for full availability to those agents can be frustrating beyond measure.

Such is the case right now with certain immunotherapy drugs that stimulate the patient’s immune system to recognize and attack cancer.  The data with these immunotherapies targeting the PD-1/PD-L1 axis (anti-PD-1 drugs) is so encouraging that three have earned U.S. Food and Drug Administration (FDA) Breakthrough Therapy designation* which aims to speed FDA approval of the most promising drugs.

This is fantastic, but how are promising drugs made available to patients in the pre-approval period?

To accelerate the accessibility of new drugs to patients, drug developers may open so-called Expanded Access Programs (EAP).  EAPs are compassionate use programs whereby drugs are made available to patients before they are fully approved for sale by the FDA.  EAPs consume resources from treatment centers and drug companies alike, but EAPs endeavor to do the right thing to help patients before drug approval and sale. MRA is proud to have been part of the conversation with companies, clinicians and the FDA that encouraged and facilitated the opening of the anti-PD-1 drug EAPs.

So, why talk about EAPs and anti-PD-1 drugs right now?

Because melanoma is once again a case study for the cutting edge. Presently, three EAPs for melanoma are open with similarly targeted agents (the anti-PD-1 antibodies). Merck’s pembrolizumab was the first EAP to open for melanoma in March 2014, followed by BMS’ nivolumab EAP in May.  Most recently, in July, BMS launched an EAP for the combination of nivolumab with its anti-CTLA4 drug, ipilimumab.  This may not sound like much, but to have three EAPs at the same time for the same cancer is unprecedented.  To have this happen with the same type of drug is nothing short of amazing!

While anti-PD-1 treatments don’t work for everyone and do have certain side-effects, MRA and others are funding research to overcome these limitations.  Nevertheless, the demonstrated progress against melanoma fuels the hope that we’ll look back to 2014 and say, “That was the year everything changed.”

About the Author

Louise Perkins HeadshotLouise M. Perkins, Ph.D., joined the Melanoma Research Alliance (MRA) as Chief Science Officer in 2013 where she is responsible for the development and implementation of MRA’s scientific strategy.  Her interests center on translational research with specific concentration on genomics, drug discovery and the advancement of novel therapeutic approaches. Prior to joining MRA, she was Chief Scientific Officer at the Multiple Myeloma Research Foundation (MMRF) for five years following a research career of 16 years at two major pharmaceutical companies.

*Note: Merck’s anti-PD-1 pembrolizumab received Breakthrough Therapy designation for melanoma in May 2013; BMS’ anti-PD-1 nivolumab received Breakthrough Therapy designation for Hodgkin Lymphoma in May 2014; Genentech/Roche’s anti-PD-L1 MPDL-3280A received Breakthrough Therapy designation for bladder cancer in June 2014.

An Outdoor Enthusiast’s Guide to Playing It Sun Safe

divingoffboatsmaller

Johnie Gall || DirtbagDarling.com

Over the past few years, “fear” has become something of a challenge in my vocabulary. I went from someone who was scared to try surfing to someone who lives out of a revamped Dodge Sprinter van traveling the country in search of adventure. I’ve been fortunate enough to surf in Hawaii, to hike the highest peaks in Colorado, to snorkel with sharks in the Florida Keys, and to free rappel 200 feet from an arch in the middle of the Utah desert.

That’s not to say I’m fearless—there are many things that still frighten me about spending so much time in the outdoors. Bears. Falling. Broken limbs. Getting lost. Melanoma.

Yes, melanoma is a very real consideration of everything I do—though you might not believe me judging my criss-cross lattice of tan lines and premature wrinkles. Tan happens, especially when you spend the majority of your day outdoors (all the sunscreen in the world won’t change that), but so does melanoma, and I’ve chosen not to be so bold as to think it won’t happen to me. That’s why protecting my skin has become as much a part of my adventure prep as loading up my backpack and buying spare fuel.

Don’t get me wrong—I wasn’t always so cautious about skin cancer. Flashback to high school and you’d find me in a tanning booth prepping for prom and roasting at the beach with my friends. I thought hiking was synonymous with sports bras and fishing meant donning nothing more than a bikini. I actually shake my head thinking of the damage I did, but like they always say, hindsight is 20/20.

That lifestyle came to screeching halt when I took my first trip to the dermatologist in my late teens—I had a mole that looked suspicious, and my doctor wanted it off. After the biopsy, he told me it was benign. The danger was over, but the shock that something I’d always (foolishly) thought could never happen to me was actually happening was still there. It was a huge wake-up call, but I was lucky.

After my initial scare, I know that skin cancer prevention begins long before the threat becomes deadly and these days, when being outside is part of my job, I know that shielding my skin doesn’t have to mean sacrificing my active lifestyle—it just means getting creative. Here’s what I do to stay protected:

Sunscreen: Because I spend a lot of time in the water, I need a screen that won’t harm the coral reefs or marine animals when it washes off. I never leave the house without at least coating my hands, feet and face with SPF 30, and follow up with a water resistant one all over my body as soon as we start any activity.

UPF Clothing: How genius is sun protective clothing? It’s one of the first things I look for in my outdoor clothing—the good companies always make their sweat-wicking shirts and pants with UPF 15 or more. When in doubt, I slather on a layer of sunscreen under my clothing, too.

In the water: I rarely go swimming in the ocean without a rash guard—but long gone are the days when donning a quick-drying shirt meant a men’s style tee or neon monstrosity. I’m lucky enough to have a few friends who are at the helm of swimwear companies aimed at protecting skin, so surf leggings and rash guards are always in my bag or stashed in the trunk of my car.

seeaback

Giant. Hats: Here’s the great thing about wearing hats—you never have to worry about what your hair looks like. I can go without a shower for a week (something I often have to do living out of a van) and no one is any the wiser. I stock up on lifeguard-style straw hats at the flea market for summer and keep a collection of wool beanies, baseball caps and floppy felt hats in my closet for the colder months.

And if there’s one thing everyone should buy, it’s a white fishing shirt (yes, even if you hate fishing). They are light, airy, and dry like lightening. Dunk them in the water to cool off on boat rides, or wear them over your hiking clothes on hot days.

Most importantly, I’ve learned to find ways to stay out of the sun. My philosophy is this: being outside is part of my life. It always has been. It always will be. Tan will happen, but as long as I’m making every effort I can to stay safe, then I won’t have any regrets (and hopefully a healthy and happy skin suit!).

 

About the Author: Johnie Gall is the founder of DirtbagDarling.com, an online magazine for women that aims at inspiring and educating women of all skill levels on how to make the most of their outdoor experience. She’s a writer and a creative consultant who calls Pennsylvania home base (but you’re more likely to find her traveling the country in her Dodge Sprinter turned RV).