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.

MRA Partner Feature: Neiman Marcus

By Regina Campbell

This week, we’re featuring a guest post from Regina Campbell, who is Director of Social Media for Neiman Marcus. Read more.

For some, skincare can be an afterthought. Of all the items on our to-do lists, applying SPF may not be at the top. The chaos of life often distracts us from the one thing we at Neiman Marcus consider most important—our personal health. Cancer has affected many of us in one way or another, and it’s up to us to protect ourselves as best we can.

Recently there have been tremendous advances in melanoma research, from increased attention to the disease to improved treatment options. Neiman Marcus is honored to be a part of this process, having partnered with the Melanoma Research Alliance (MRA) to increase awareness and fund research to help reduce the risk of melanoma.

Although genetics and increasing age can be risk factors for melanoma, exposure to ultraviolet (UV) rays is a major risk factor for the disease. According to the MRA, melanoma is the most common cancer diagnosis in women ages 25-29 years old.

Neiman Marcus’ wide assortment of products includes many brands that strive to incorporate agents that help protect the skin from the sun for women of all ages. In fact, during June we are partnering with companies that are generously donating 10% of net proceeds of select suncare product sales to support the MRA.

But it’s not just beauty products that help shield the sun. Swimwear brand Cover addresses the need for fashionable and protective T-shirts and cover-ups for women to wear in the sun. Founder Lisa Moore launched Cover in 2008, just two years before her 22-year-old sister was diagnosed with melanoma. Since then, the line has made health a priority.

It’s increasingly important for women of all ages to understand their family history with cancer, be persistent with regular health exams, and help protect one’s skin from external harm such as the sun.

Despite the advancements made in fighting melanoma, we must still acknowledge the long road ahead. Many still downplay the seriousness of the disease with the assumption that it’s easy to treat. As someone who has a family history of skin cancer, I’m vigilant about making frequent visits to the dermatologist. Considering my personal experience with the disease, I urge all women to do the same.

8th Annual Scientific Retreat Recap

The end of February was a momentous one for the MRA team and all the folks in the melanoma community. We hosted our 8th Annual Scientific Retreat in Washington, DC, and they truly just seem to get better and better.

The Retreat serves two main roles for those invited participants. First, is the centerpiece of scientific knowledge sharing, as evidenced by the more than 20 MRA-funded investigators who presented at the meeting as well as several supplementary events and sessions aimed to provide a holistic look at the state of melanoma research and treatment. Secondly, the Retreat provides an opportunity for participants from all sectors to network. We consistently hear about the new collaborations to fight melanoma that arise from networking at this meeting.

Our Melanoma Forum opened the Retreat with a session about the continuing evolution of patient participation in the research process. It was attended by 50 patients, advocates, and supporters who shared their personal experiences to help advance our work by articulating the unmet needs and burden of the disease from those who understand it personally. Special thanks to Raj Kulkarni, an MRA Young Investigator at UCLA, and Kim McCleary of FasterCures for helping to build out this event.

MRARetreat_Selects-16Our lunchtime panel discussion (left), moderated by Mike Milken, featured four amazing thought leaders in melanoma. Drs. Boris Bastian of UCSF, Levi Garraway of Dana-Farber Cancer Institute, Lynn Schuchter of U Pennsylvania and Suzanne Topalian of Johns Hopkins University wo provided a look forward for the future of melanoma research.

In addition, we convened the growing group of MRA-funded Young Investigators to explore several key issues in clinical translation, while our Industry Roundtable meeting brought together representatives from the NCI, FDA, academia and industry to thoughtfully address challenges and opportunities for future collaboration on behalf of patients.

MRARetreat_Selects-19A highlight of the meeting was welcoming newly appointed FDA Commissioner Robert Califf (left), who came straight from his confirmation at the White House to deliver remarks to the MRA community.

It was truly a convergence of the brightest stars in the field and a community dedicated to achieving MRA’s mission of defeating melanoma. You can read more about in blog posts from Dr. Len, of the American Cancer Society, and T.J. Sharpe, a melanoma survivor who blogs for Philly.com.

We thank everyone who came to participate in the meeting, as well as our sponsors, who all helped make our 8th Annual Scientific Retreat a success!

 

 

Researcher Q&A: Dr. John D’Orazio

In the latest blog post, we chatted with the University of Kentucky’s John D’Orazio, M.D., Ph.D., a pediatric hematologist oncologist, and a 2015 MRA grant awardee. Read on to learn what he has to say about melanoma research and prevention efforts.

How did you get interested in melanoma and your field of research?

I am a physician scientist who combines a clinical career in pediatric oncology with basic research aimed at understanding the molecular mechanisms of melanoma development. Kids don’t usually get melanoma, thankfully. But prevention is such an important part of combating this disease – particularly during childhood since pediatric UV exposure plays such an important causative role for melanoma later in life. My overarching interest, related to pediatric oncology, is understanding cancer predispositions.

Tell me about your research.

During my fellowship, I paired up with Dr. David Fisher, who is one of top melanoma biologists in the world and who happened to also be my ward attending on the pediatric oncology service at Boston Children’s Hospital. David approached me with a research project relating to understanding why fair-skinned people get melanoma so much more than dark-skinned individuals. We knew it wasn’t just about melanin since albinos – people with normal numbers of melanocytes but who don’t make melanin at all because of inherited defects in melanin synthetic enzymes – almost never get melanoma.

In the Fisher lab, I focused on the contribution of the melanocortin 1 receptor (MC1R) in pigmentation and melanocyte UV sensitivity. We chose to study MC1R since loss-of-function MC1R polymorphisms are very common among fair-skinned people and raise lifetime melanoma risk by about four-fold. Using a unique mouse model that I developed, David and I discovered that MC1R controlled whether a mouse’s skin would express dark or light melanin.

We found that pharmacologic replacement of MC1R signaling function, through the topical application of cAMP-promoting drugs to the mice, was enough to turn the skin from a blonde UV-sensitive and cancer-prone complexion to a heavily melanized UV- and cancer-resistant phenotype instead. We had demonstrated sunless tanning by pharmacologic manipulation of the MC1R signaling axis, suggesting that skin could be shielded from UV damage by melanin stimulation.

Since establishing my own lab, we’ve focused on other ways in which MC1R signaling enables melanocytes to resist UV damage and carcinogenesis. We’ve been studying how cAMP signaling increases the efficiency by which melanocytes recover and repair UV DNA damage.

How has MRA funding helped your work?

MRA funding absolutely lets us open up a new avenue of research that wouldn’t have otherwise been possible. We’re still focused on MC1R signaling but are now funded to study the natural hormonal regulation of this pathway in the skin. The MRA grant allows us to study how the pathway impacts melanoma risk on multiple fronts.

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

Melanoma incidence just keeps getting higher. Whatever is underlying it, we have to do something about it. Almost 2% of the population is going to be affected by melanoma in their lifetime. It’s a big problem, and although exciting advances are being made in the field of anti-melanoma therapeutics (especially targeted therapy and immunotherapy), it is still far better to avoid the disease in the first place. I would like to see more focus put into active melanoma prevention, not only through policy and indoor tanning regulation, sun protection, and public health aspects, but by using a science-based approach to enhance the skin’s ability to resist UV-mediated carcinogenesis.

What do you do when you’re not seeing patients or conducting research?

I’m a family guy. I have one daughter, a wife who is in science, and a dog. I love to cook, enjoy nature photography and have gotten pretty good at pickleball.

 

Learn more about MRA’s Research.

 

The Latest on Skin Cancer Screenings

To routinely screen for skin cancer or not to screen? That hot-button question still doesn’t have a solid answer.

In 2009, the U.S. Preventive Services Task Force found insufficient evidence to recommend annual skin cancer screenings for all adults. Currently, the Task Force is reviewing the most recent research findings and may (or may not) change this recommendation. MRA has funded research looking at the benefits and harms of population-based skin checks, and the results of this research will mature over the next year.

In the meantime, certain high-risk people should discuss with their healthcare provider about annual skin exams with a dermatologist or other trained professional.

Am I High Risk for Skin Cancer?

You’re considered high risk if you meet one or more of these criteria:

  • You have a family history of skin cancer.
  • You have a personal history (prior diagnosis) of skin cancer.
  • You have a lot of moles or freckles.
  • You have a fair complexion and/or have red or blonde hair.
  • History of sunburns and/or use of tanning beds.

Skin Cancer Screening: What to Expect

Most skin checks begin with a doctor (usually a dermatologist) visually giving your skin a once-over to look for suspicious-looking moles, freckles, lesions or skin changes. Your doctor may use a dermatoscope during this process. This magnifying device uses a special light source to illuminate features below the skin’s surface.

Screening with Total Body Photography

Total body photography (TBP) systems can aid melanoma screening for certain high-risk individuals, particularly those with many moles.

There are several advantages to this technology:

  • TBP can help physicians keep track of many suspicious lesions on an individual. Should your doctor detect a possible skin change at a later appointment, he or she can compare it to baseline images.
  • Doctors avoid performing unnecessary biopsies if the comparison indicates that the suspicious area really hasn’t changed.

If you’re at high risk for melanoma, check with your dermatologist to see if TBP is available. You also should check with you health insurance provider since the service may not be covered.

MRA funded a research award to develop a three-dimensional TBP system. Using more than 40 cameras, the system photographs the entire surface of the skin and creates a digital model in less time than current TBP systems. It is currently only available at one skin cancer clinic in the U.S.

Learn more about early detection and prevention: Educate yourself about melanoma.

You can read the full recap in our Scientific Retreat Report.

 

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).

 

Melanoma Awareness From a High Schooler’s Perspective: Where We Are and Where We Need To Be

Not many teenagers know that melanoma is the number one new cancer diagnosed in young adults ages 25-29. It is also difficult to believe that as with many mistakes made at a young age, neglecting sun safety during childhood and adolescence can harm you later in life.

Most of my peers would never dream of lighting a cigarette, yet few would think twice about laying out unprotected at the pool or beach.  Luckily, people are beginning to understand the dangers of indoor tanning, appropriately likening tanning beds to coffins. In previous years, girls would go to tanning beds before school dances. They now settle for a safer (but orange) alternative: spray-tans. Skin cancer awareness has increased, sadly due to the rise in its prevalence, but there is still a ways to go. Most people I know have yet to realize that unprotected sun exposure is just as deadly as a tanning bed.

They're called artificial sun for a reason

They’re called artificial sun for a reason

My paler friends are the most vigilant about sunscreen use. Not one of them wants to get sunburned, so they’re sure to use (and re-apply!) broad-spectrum, high-SPF sunscreen to protect themselves. They do this to escape short-term effects of the sun, but rarely think about the sun’s capability for long-term damage. They are correct in practice, but lack part of the motive for their protective actions. Maybe this is why the occasional girl will still come home from spring break bright red.  They don’t know the danger and how one blistering sunburn in childhood or adolescence doubles their risk for melanoma.

Many of my friends have olive-toned skin, like I do, that tans easily and rarely burns. It is hard for people with this skin type to think twice about going to the beach and getting a dark tan.  Ironically, we are quick to criticize our fair-skinned friends when they get badly sunburned, but the truth is everyone is at risk for melanoma, the most dangerous form of skin cancer.

Tanning is a sign of our body’s response to damage caused by harmful UV rays. Without sunscreen, UV rays from the sun penetrate the skin and damage DNA. Cells called melanocytes can begin to grow uncontrollably because of change in their genetic makeup, and melanoma (skin cancer of melanocytes) develops. Many people do not see skin cancer as a big deal. It is often thought of as a spot that can be removed and forgotten. However, this is not the case with melanoma, which makes up only 4% of skin cancer cases but 80% of skin cancer deaths. Melanoma spreads extremely rapidly and if not caught and treated early on, will spread to the lymph nodes and vital organs. Stage 0 or 1 melanoma has a 90% cure rate, while Stage 4 melanoma patients have a median life expectancy of less than a year. If more people knew these facts, the melanoma death rate could decrease significantly.

What does the future hold for melanoma awareness? Teenagers have already progressed to the point where most of us avoid tanning beds. The next step is to be better at protecting ourselves from the sun, even though it means giving up tanning in favor of sunscreen, healthy skin, and a melanoma-free life. If we can be truly and completely aware of the sun’s hazards, we can motivate ourselves and others to eradicate this aggressive but completely preventable disease.

About the Author

abouttheauthorI’m Isabella Todaro, a rising junior at Georgetown Visitation in Washington, D.C. I have spent this past week as a volunteer at MRA and learned a lot in the process. My cousin has been working here for two years, so I was already interested in the organization before I decided to volunteer. The experience has been great, as I have learned information that otherwise might have remained unfamiliar to me. Like many people, I used to think that getting sunburned, but not getting a tan, puts people at risk for melanoma. Now I know that both of these dangerous behaviors are risky. After learning this and so much more at MRA, I intend to practice sun safety and let others know why they should, too.