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.

Guest Post from the Polka Dot Mama

This week, we’re featuring a guest post from Tracy Callahan, who founded and leads the Polka Dot Mama Melanoma Foundation

T CallahanMy name is Tracy Callahan and I am the Founder and CEO of the Polka Dot Mama Melanoma Foundation established in 2015.

I was first diagnosed with early stage melanoma at the age of 38, and by age 40, I had been diagnosed two more times. I am the Mom of two amazing boys ages 8 and 10 and they nicknamed me the “Polka Dot Mama” because of my many moles. I consider myself fortunate that my melanomas were caught early. I know that this is not the case for many.

As a former research nurse, I knew and understood the importance of supporting and funding research. After my third diagnosis I decided to start blogging. I knew that I wanted to use my voice to raise awareness for this often unspoken about cancer. Soon after starting my blog, I reached out to the Melanoma Research Alliance (MRA).  I knew right away that I wanted to align myself with them and work towards raising money for much needed melanoma research.

In March of 2015, I began planning a Gala. I knew that I wanted it to not only benefit melanoma research, but I also wanted to stay committed to keeping it locally sourced. In addition to being a melanoma advocate, I am also a foodie!

On May 1, 2016, we will host our first annual “Taste For a Cure: Chef’s Gala Benefiting Melanoma Research.” This unique farm-to-table gala will raise money to be donated to the MRA. We have been overwhelmed with the support of our local community. It has been incredible to see local chefs, businesses and sponsors donating their time, talent and services to help us raise as much money as possible.  As of February 4 (World Cancer Day) our event is officially SOLD OUT!

In addition to the Gala, the Polka Dot Mama Melanoma Foundation has been working with a local media company and has begun production on public service announcements as well as an awareness video that will debut at the Gala. We have been collaborating with multiple grass roots melanoma moundations across the country in hopes that together we can have a larger impact.

So many advancements have been made with the treatment options for melanoma in the last few years. It is my strong belief that we are on the cusp of not only finding more effective treatments, but also a cure.  The MRA is the largest private funder of melanoma research and I am truly honored to be a charitable ally of theirs.

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.

A Daughter’s Take: My Mother’s Journey

This week, we’re pleased to welcome our youngest guest blogger, Sadie Kargman. Sadie’s sharing her family’s personal experience with melanoma and has committed to helping support MRA through fundraising. Read more.

Hi, my name is Sadie and when I was only in second grade my mom was diagnosed with melanoma. At first, considering, I was only 8 I didn’t quite know what was happening to my mom. As the weeks went by I noticed a pattern, she kept on going to the doctors or having them come over and getting what I called booboos (shots). Later when she finally sat down and explained what was happing to her it struck me. I could lose my mother.

kargmans

Sadie with her mom and dad

When she was getting the treatment she needed I wanted to do everything I could to help my mom. Because I was so young the only thing I could do was be extra nice and try to make my moms life a little bit easier, and trust that the doctors were doing everything they could.

Luckily for my family, my mom was able to beat cancer. Now that I am older I am thrilled to be able to help those afflicted with the same disease that my mom had.

When it came to picking a charity for my bat mitzvah the choice was easy. I wanted to work with the MRA because the cause was so near to my heart. Not only am I committed to raising money for the MRA but I am also passionate about spreading awareness about melanoma.During my time at sleep away camp I am always encouraging other girls to wear sunscreen and protect themselves from the sun.

Hopefully through my partnership with MRA I can learn even more about melanoma and help raise awareness so others can prevent getting the same disease as my mom had.

 

To learn more and help support Sadie’s efforts, visit her fundraising page.

A Father Turns His Grief into Fundraising

Ross King lost his daughter, Jackie, to melanoma when she was just 22 years old. Since then, Ross has become a passionate supporter of melanoma research to help fulfill a promise he made to Jackie. Ross talked with us about his experience and what motivates him to take up the cause.

Tell us a bit about when you first learned of Jackie’s diagnosis.

Jackie and Ross

Jackie had a mole on her back that was causing her pain because it was rubbing against her bra strap. When it started bleeding, she went to the dermatologist. The biopsy revealed that she had Stage 2 melanoma.

What were you thinking when you first learned about Jackie’s melanoma diagnosis?

Initially, I was not able to comprehend the severity of Jackie’s diagnosis because I did not know the four stage cancer rating system.  The doctor told us that her records and initial biopsy were being immediately transferred to Emory University’s Winship Cancer Institute.  I immediately knew the severity of her diagnosis at that moment.

Can you share with us a little bit about what the next few months after Jackie’s diagnosis were like?

Jackie had her initial surgery to clean the margins on her back where the mole was located on her 19th birthday – March 26, 2011.  They also removed four lymph nodes from her neck.  We were told one week later that one of the lymph nodes proved that the melanoma had spread to other locations in her body. After her recovery, she started to go back to her normal activities and began to embark on her adult life.

Then Jackie’s condition worsened. Can you tell us what that was like?

Jackie was having pain in her abdomen – which she attributed to working out too hard – but we soon learned that the melanoma had spread to her abdomen. Around this time, I became acquainted with the team at the Melanoma Research Alliance, who put me in touch with some doctors who were helping to develop new drugs, such as vemurafenib, to treat melanoma. Jackie was having a tough bout with radiation, which left her bedridden and unable to eat on her own. After consulting with these doctors, we decided to try a new drug for Jackie. Within three days of starting the new therapy, Jackie was moving around and able to walk up and down stairs.

What do you remember from Jackie’s last months?

Unfortunately Jackie’s cancer progressed, with her melanoma migrating to Stage 4. It became clear that we needed to move Jackie into a new medical care environment. We were introduced to doctors at Brigham and Women’s Hospital, and decided to transfer her care there.

One day, I received a call from her mom telling me Jackie had taken a turn for the worse. I flew up immediately to be with her. Within 24 hours of arriving, the care team was talking about taking her to a hospice facility.

There were so many emotions during her two and a half weeks in hospice. It was painful, peaceful, and calming.

How are you honoring Jackie’s legacy?

After she was diagnosed, Jackie did a lot of advocacy work to bring awareness and attention to melanoma. She told me that she didn’t want her memory to be forgotten. So I made a promise to her to keep her legacy alive, and we’re doing that by fundraising for an MRA Young Investigator Award. I’m proud to say that we hit our fundraising goal just before the one-year anniversary of Jackie’s passing. We now officially have a Jackie King-MRA Young Investigator Award, but we’re not done. I want to keep raising funds for this important cause.

What’s your hope for the field of melanoma research?

I want to see a much more aggressive approach to drug approval, specifically in the area of melanoma. In five years, my resolute hope is that we’d be in a place where we could have a quicker process for getting therapies to the marketplace to benefit patients.

 

To make a donation in memory of Jackie King, please visit Ross King’s fundraising page.

Daughter Celebrates Her Mom’s Health This Holiday Season

By Hilary Rogers

In this guest post, Hilary Rogers, a member of the Leveraged Finance Fights Melanoma Steering Committee, shares her perspective on her mom’s battle with melanoma.

In the winter of 2012, my family and I found out that our mother’s stage 3 melanoma diagnosis had progressed to her lungs. Even though this was not that long ago, the treatments available at the time only promised to delay the inevitable by a few years at most. On the tails of a wonderful

Rogers family

Author Hilary Rogers, left, and her family.

Thanksgiving and Christmas, it was heartbreaking to imagine it being one of the last holiday seasons that my mother, father, brother, sister and I would all spend together as a family. While I am sure that our parents shared the same fears that my siblings and I did, they were determined to not let melanoma interrupt our family’s future holidays together. They remained positive and researched various clinical trials, and we were thrilled when our mother was admitted into a trial for the new and promising immunotherapy drug, nivolumab.

After only a few months of receiving the treatment, the tumors on our mother’s lungs began to shrink. We were ecstatic when her doctor reported that the tumors were no longer there in the fall of 2014. It has been over a year since we received the incredible news, and we are happy to report that our mom is as healthy as ever.

Through good times and bad over the last three years, our mom continues to be the first one up on Christmas morning as she always has been. Rather than eclipse our family holidays, her fight has brought our family and friends even closer together.

When the FDA approved several of the immunotherapy drugs last year, my family and I were thrilled for the thousands of melanoma patients whose lives were about to potentially change by having access to these groundbreaking drugs.  My family and I are extremely grateful for the work and dedication that go into the research, funding and development of these innovative drugs that have changed the medical landscape, and most importantly, the lives of those affected by melanoma.

What we’ve gone through has brought new awareness to my family and everyone we know. I can’t get into my brother’s car without seeing his SPF 70 sunscreen handy in the center console. My sister and I go to the dermatologist regularly for skin checks. This year we’re even taking a family trip for New Year’s to foggy London rather than some warm beach as we have done in the past.

Most importantly, we as a family understand the risks of this disease, but also the hope that lies in today’s new treatments. It has been our goal and pleasure to spread this awareness to people and families going through what we went through so that their holidays may continue to be happy too.

We would like to thank MRA as well as the researchers, doctors and –above all else – the patients who have enrolled in these groundbreaking trials. Your hard work, dedication and bravery have made it possible for our family as well as countless others to look forward to enjoying many more joyful holidays together in the years to come. For that, we are eternally grateful.

Partnering for Cures: How Patients Can Stop Talking and Start Doing Something

Earlier this week, more than 700 thought leaders from throughout the healthcare industry gathered in New York for FasterCures’ Partnering for Cures meeting. This annual event brings together a variety of decision-makers from across diseases who are motivated by the same mission – to reduce the time and cost of getting new therapies from discovery to patients.

JRowbottomFor many attendees, the cause is personal, as they advocate on behalf of a loved one or community. That’s the case for Jeff Rowbottom, who is a member of the MRA Board of Directors. Jeff became involved in MRA after his own diagnosis. He was invited to speak at the closing plenary during Partnering for Cures, sharing insight based on personal experience. Jeff was introduced by his own oncologist, Jedd Wolchok, from Memorial Sloan Kettering Cancer Center.

In his introduction, Dr. Wolchok described Jeff as the “ultimate activist patient.”

During Jeff’s talk, he offered advice to others going through a life-changing medical diagnosis:

  1. Network as much as possible. Reaching out to others –organizations, patients, doctors – helped Jeff understand and process his melanoma diagnosis. And seek out the best care. “You can learn a lot even without a Ph.D.,” says Jeff.
  2. Don’t underestimate the power of one. Jeff believes there is a role for everyone to play, regardless of how powerless they may feel. Tackling such a large issue as curing cancer can seem daunting. “Lots of people may say ‘who am I?’ to work on such a big issue,” says Jeff. “But you really never know until you try, and it’s important we all try.”
  3. Connect the dots. Time is the most precious commodity of all, and based on his own experience, Jeff believes it’s important to make connections quickly to have an impact. “You can save people’s lives by getting them to the right doctor.”

Watch Jeff’s speech here. https://youtu.be/VQoA1JtJq0c?t=47m12s