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.

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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.

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

Immunotherapy Patient Forum: 6 Reasons to Attend

On November 7, the Melanoma Research Alliance is co-hosting a Patient Forum on Immunology with Global Resource for Advancing Cancer Education and the Society for Immunotherapy of Cancer. The event will be held at the National Harbor, near Washington, DC. Online registration is open through October 30.

The Forum will cover important topics for several different cancers, including:

  • Melanoma
  • Leukemia/Lymphoma
  • Lung Cancer
  • Genitourinary Cancers

Here are six reasons to attend the Patient Forum:

  1. Hear the Latest Information. The patient forum coincides with the annual meeting for the Society for Immunotherapy of Cancer, a professional meeting for the leading immunotherapists. You will hear the most up-to-date information and thinking from the leading experts.
  2. Immunotherapy is a Hot Topic for Cancer Treatment. You may have seen some of the news coverage about immunotherapy over the last couple of years. This is your opportunity to hear about the cutting-edge ways we’re using the body’s own immune system to fight cancer.
  3. Meet Other Patients. Patients from up and down the East Coast will be in attendance. You will have the opportunity to share your experience and learn about their journeys.
  4. Interact with some of the Leading Doctors. The presenters are among the leaders in the field of immunology, and they have deep expertise in caring for patients using the most up-to-date therapies. This intimate forum will provide an opportunity to ask questions and interact with some of these top doctors.
  5. Information Tailored to Your Cancer. The forum will provide a terrific overview, as well sessions for each cancer type. These break-out panels that are specific to each cancer type will provide a personalized experience for patients and caregivers.
  6. Arm Yourself with Information. You will come away with answers to important questions about treatment options, as well as some ideas for questions you may want to ask your provider. This session is designed to give patients and caregivers the latest information – and empower them to take an active part in their care.

OK, ready to go? Register today!

And if you’re still not convinced, check out the agenda to see the great speaker line up:

Agenda

A Father Shares His Family’s Journey with Melanoma

By Skip Grinberg

In this guest blog post, Skip Grinberg shares his family’s experience with melanoma and his drive to advance research.

Skip Grinberg and his extended family

Skip Grinberg and his extended family

Life can occasionally throw you a sharp-breaking curveball. As a result, you may find yourself involved in issues and campaigns that you never could have anticipated. My interest in melanoma and participation with the Melanoma Research Alliance (MRA) fall into this category.

Two years ago my son, Lee, called to tell me that he had been diagnosed with melanoma that had metastasized to his brain. It was one of those phone calls you never want to receive – one that completely refocuses your life.

Lee had surgery a few days later to remove two brain tumors. After surgery he began investigating treatment options, including immunotherapy drugs, most of which were only available in clinical trials. He was fortunate to contact another melanoma patient, Jeff Rowbottom, who has been very active with MRA. With the help of Jeff and MRA, a new universe of information opened, assisting Lee in his understanding of the disease and treatment options. In December 2013, Lee entered a clinical trial – he received a combination of nivolumab and lirilumab, experimental immunotherapy drugs developed by Bristol-Myers Squibb.

As I followed Lee’s treatment, I became aware of the sharp rise in the number of melanoma cases and, in particular, the disturbing increase in diagnosis of young adults. I also became aware of the progress made in the past few years in the treatment of melanoma and the leadership role that MRA has played in funding research grants that have made these advancements possible.

In February 2014, I joined Lee at the MRA Annual Scientific Meeting in Washington. I was thoroughly impressed by the dedication of the researchers, the extent of the research being explored and its implications for the future – not only for the treatment of melanoma but also for other forms of cancer.  Although the research presentations were way over my non-scientific head, I was able to digest enough “big-picture” information so that I could explain immunotherapy to my friends and family.  The meeting also provided an opportunity to network with other melanoma patients and their families and many of the professionals working in this field. The experience further emphasized how MRA has been instrumental in the advancement of knowledge that has benefited Lee and many other patients, giving them something that had rarely existed in the world of metastatic melanoma – hope for the future.

I was very grateful and knew I had to do my part. I created a personal letter telling Lee’s story and sent it to friends and relatives, probably about 150 letters in total. The goal was twofold: to raise funds for MRA and to educate people on the seriousness of melanoma and the progress being made in its treatment. The response was overwhelming and personally very gratifying. Not only did MRA receive a significant number of contributions, but many people called to thank me for informing them about melanoma and to express support for Lee and wish him well. I am now starting to work on the second phase of my personal campaign for MRA. I am excited about it and hoping it is as successful as the first. In addition, our entire family supported #SunHatSat last Memorial Day weekend, to raise awareness about melanoma prevention. We took a photo of four generations of our family wearing hats that weekend at a family picnic.

As I said at the beginning, I never would have expected to be involved with MRA, but I am so glad I am because of the positive impact the organization is having on Lee and thousands of other patients. Our entire family is forever grateful.

What We Can Learn from President Carter’s Melanoma Diagnosis and Treatment

By Louise M. Perkins, Ph.D.

Chief Science Officer

President Jimmy Carter revealed to the world his diagnosis with melanoma with both the grace and bravery that we may all aspire to in the face of such news. His melanoma presentation was a bit unusual and naturally confusing. He was initially diagnosed with a tumor in his liver and then on closer exploration it was found to have spread to the brain. Once the tumor in his liver was removed and analyzed, his doctors could tell that it was a melanoma. Understanding what type of cancer he has is important, as it is helping to direct his treatment. It is fairly typical for melanoma to progress to the brain, as has been reported in President Carter’s case.

Image courtesy of cancer.gov

            Image courtesy of cancer.gov

So, how can a cancer that usually starts in the skin suddenly pop up in someone’s brain and liver?  Well, first of all, this is really rare. Some estimates say only 2% to 6% of melanomas are identified without ever finding the original (primary) tumor. Where do these odd melanomas come from?

Let’s back up a second. Melanomas are pigment-producing cells called melanocytes that have become cancerous.

Melanocytes are not only present on what we think of as skin, but also found in mucosal surfaces like the inside of the nose or mouth, under nails, as well as in eyes and ears – and even some organs.

So, in the case of President Carter, there are a couple possibilities:

  1. He may have had a skin melanoma that had a couple bad cells that split off and hid while his immune system effectively dealt with the primary tumor and he was none the worse. For whatever reason the stray cells then got out of control, leading to his current disease.
  2. Alternatively, something similar may have happened with the melanoma being relatively benign at a rare site in his body, but a few “bad guy” cells broke away and seeded in the brain and liver and then grew more aggressively.

We may never know.

The good news is that Mr. Carter is able to take advantage of the benefits of research that has led to sweeping advances in melanoma. Beginning in 2011, care for patients with advanced melanoma changed profoundly and the FDA has approved eight new treatments since then. Of relevance to President Carter’s specific treatment plan, MRA has funded research on melanoma brain metastases as well as on the combination of anti-PD-1 treatment and radiation therapy, similar to what has been offered him by his doctors.

MRA’s critical and timely infusion of funding has contributed to the sweeping changes in melanoma care with a significant part of our portfolio invested in research on just the types of treatments that will hopefully help President Carter and tens of thousands of other cancer patients in the future. My thoughts and prayers are with him and the many others engaged in their fight against melanoma.

You can learn more about our investments and hope you will consider making a donation to continue to support melanoma research.

Ups and Downs for Melanoma. But Staying Focused.

By Louise M. Perkins, PhD

Chief Science Officer Louise Perkins Headshot

This time a week ago I was jubilant. The SU2C-MRA Melanoma Dream Team’s paper describing a precision medicine approach to treating patients had just been published. And in the middle of the week an important article published in the prestigious scientific journal Cell describing the comprehensive genomic landscape of over 300 melanomas by The Cancer Genome Atlas team – an enormous work that allows us to better understand and target melanoma.

Clearly, with all of this information at our fingertips, with new immunotherapy treatments, with targeted therapy options and new ways to precisely match treatments to patients we have never been closer to defeating this disease. So much progress! I was so excited.

This week I got a text that brought me back to the real world.

In April, I met a businessman at the Milken Institute Global Conference. He told me of his friend, J, who had advanced melanoma. He asked if I might try to help J in some way. I spoke with her and learned that fortunately, she was already connected with some of the leading docs in melanoma. She’d gotten all the new treatments. But she wasn’t doing great and felt like she needed to move back home to be closer to her mom. I had a chance to learn her story and get to know her a tiny bit and was hopeful that things might turn out well.

The text I awoke to let me know that J. died earlier this week. At 32, she’d lost her fight to melanoma.

Earlier this week, MRA met with folks from the FDA along with two leading melanoma experts (Michael Atkins and Paul Chapman) to discuss the latest in the field from the recent cancer meetings. These conversations help to identify new opportunities and help keep the focus on melanoma. The FDA colleagues are great, by the way, and have been amazing partners in bringing new treatments to patients with melanoma very quickly.

In the discussion, both Drs. Atkins and Chapman pointed out that older melanoma patients, the ones who would typically be least likely to tolerate and respond to chemotherapy, actually seem to respond to AND tolerate checkpoint therapy (anti-CTLA-4 and/or anti-PD-1) treatment better than younger folks. The reasons for this aren’t quite clear but two possible explanations spring to mind. Perhaps the tumors in these older individuals have more mutations acquired over a long life and so have more ‘hooks’ for the immune system to latch on to and recognize as foreign. Another hypothesis is that the older folks have immune systems that aren’t as robust as those in younger patients. That robust immune system might get a little overactive in young folks – harming good cells alongside the tumor ones (leading to more side effects) and also prematurely turning off the anti-tumor response.

Is it possible this is like the Spanish Flu where younger, fitter patients were more at risk than older patients? Researchers are working on understanding the differences between responders and non-responders to try to determine what might be tweaked to elicit more and more responses in patients. One of the key takeaways from the meeting with the FDA was the need to continue to focus on those patients who aren’t fully benefiting from current therapy to understand the unique features of their melanoma and work together to beat it. We talked about sub-types that form in the eye, the mucosal surfaces and on non-sun-exposed sites like soles of the feet. We talked about melanoma that has metastasized to the brain – a vexing problem for too many. All of these patients who don’t respond to treatments, old or young, need better options.

Unfortunately, it is too late to help J, or Jackie, or Tara – the young women MRA got to know in the last two years – or Claire, the 17 year old who went to my high school. The deaths of these young women put a fine point on the urgency to keep the pressure on for all melanoma patients to find a cure.

Thanks to all of you for funding the research to understand what’s different and what to do to change the outcomes for patients like these young women – and all of those with advanced melanoma. We’re committed and appreciate your commitment, too.

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.