Meredith's Mission for Melanoma is a nonprofit organization born from the loss of its namesake, Meredith. Meredith was 35 years old and a newlywed when she lost her life to melanoma. It was her wish to increase melanoma awareness in her community. Her family made this wish a reality when they established Meredith's Mission for Melanoma. Their goal is 2-fold: first, to raise awareness of this deadly disease by providing education; and second, to raise funds for melanoma research at the MD Anderson Cancer Center and Dell Medical School at The University of Texas at Austin
We had the opportunity to speak with Meredith's sister, Stephanie Whitten, as well as Matthew Fox, MD, Dell Medical School at The University of Texas at Austin, about Meredith's Mission and the advances being made in the treatment of melanoma.
JONS Good morning and thank you for meeting with us. Stephanie, can you tell us a little about your sister and the founding of Meredith's Mission?
Ms Whitten My sister was first diagnosed with stage 1 melanoma in 2002 at the age of 22. She was successfully treated with surgery. Thirteen years later, and just 4 weeks after her wedding, she was diagnosed with a recurrent stage 3 melanoma. The disease progressed quickly to stage 4, and she passed on October 6, 2015, just 1 week after her 35th birthday.
The idea for Meredith's Mission for Melanoma came about the day after we learned Meredith's cancer was stage 4. She and I had taken the day off to spend time together. We discussed the lack of melanoma-specific organizations in our hometown of Austin, Texas. LIVESTRONG has a presence in Austin, and there are various national organizations, but none focus on melanoma. It was her wish that we create awareness and educate the community about melanoma in the hope of preventing other families from going through what we were dealing with.
At the time of this discussion, it still had not crossed my mind that she would lose the battle to melanoma. After her passing, our family along with her husband and his family, made the decision to follow through on creating a foundation to educate our community about melanoma, as well as raise funds for melanoma research. We weren't able to save her, but hopefully our efforts will help save someone else. In January of 2016, we officially founded the 501(c)(3) Meredith's Mission for Melanoma.
JONS You mentioned one of the goals of Meredith's Mission is to raise awareness about melanoma. How is the foundation accomplishing this goal?
Ms Whitten We host an annual gala where guests hear from survivors and physicians. We just completed our third gala, which featured 3 speakers: a dermatologist, a woman whose 21-year-old son is fighting melanoma, and a survivor who just completed treatment for her second battle with melanoma. She was particularly inspirational because she also happens to be the mother of 4 young children.
We believe that guests of the gala are impacted by the research presented by the physician speaker as well as by the personal stories shared by survivors. This information can help them to make better decisions and stop putting off a visit to the dermatologist to have their skin checked. I love hearing stories from gala attendees about how after attending our event they went the next week to have their skin checked.
We really want to promote awareness that your skin is your largest organ, and melanoma is the deadliest skin cancer. If education and awareness can save 1 person's life by catching a skin cancer early, then we are accomplishing our mission.
JONS Another objective is to raise funds to support melanoma research. Can you tell us about this effort?
Ms Whitten We currently host 2 fundraising events each year but plan to increase that number as we grow. Our gala is our largest fundraiser, followed by our University of Texas (UT) Football Tailgate in the fall. In our first year we were able to donate $25,000 to MD Anderson. We thought it would be great if we were able to donate $10,000 in our first year. You can image how thrilled and grateful we were to be able to donate that amount in our inaugural year. In our second year we donated $20,000 to MD Anderson and $20,000 to the new UT Dell Medical School for its future dermatology and melanoma department. We are excited to be involved in supporting the efforts of the UT Dell Medical School in establishing its melanoma department. The goal is to provide melanoma services to the people in central Texas so they no longer have to travel out of town to get the treatments they need.
JONS How does the foundation advise people to reduce their risks of melanoma?
Ms Whitten First and foremost, stay out of the sun. If you have to be in the sun, we stress the importance of covering up, wearing a hat, and absolutely covering your body in sunscreen and applying it frequently. On top of that, regular skin checks are so important. The earlier skin cancer is caught, the better the odds of successfully treating it. Early detection is key.
JONS Do you have any advice for oncology nurse and patient navigators when talking to their patients about melanoma?
Ms Whitten When Meredith was diagnosed in June 2015, we had absolutely no idea where to start. She had found a lump under her arm. After various rounds of antibiotics and a mammogram, her OBGYN ordered a biopsy. That doctor gave her some names of oncologists to reach out to, but as a patient, how do you know which ones are best for treating melanoma? We relied on a family friend who is a dermatologist. He was able to recommend a local oncologist, and he provided great information and advice on next steps. If it wasn't for him, we would have been lost.
A navigator would have been a welcome resource for us in Meredith's next phase of care. Once she got in with her oncologist, it was surgery after surgery and decisions on next steps. Having a patient navigator would have been extremely helpful to us in decision-making, in providing education for those things that the doctor was not able to help with, and for advice on support services such as counseling. Patients can be overwhelmed with the amount of information being thrown at them, and much of the information may not be communicated back to family members who also need to be aware of what is going on with their loved one.
JONS Dr Fox, can you give an overview of treatment options for patients with BRAF mutations as well as options for patients with wild-type BRAF?
Dr Fox The standard first-line treatment for melanoma remains surgical resection. For patients who unfortunately develop metastatic melanoma, there is an increasingly broad arsenal of treatments, including several new and exciting targeted therapies. Some treatments target specific genes found in the melanoma tumor itself, and others act by activating the immune system to fight off the tumor.
BRAF gene mutations are found in some melanomas and can be targeted by specific medications, including vemurafenib and dabrafenib. These medications are often given in combination with a different class of targeted inhibitors, termed MEK inhibitors. Given together, these medications have been shown to increase overall survival for patients with metastatic melanoma and can often cause fairly rapid involution of tumors.
For patients who have melanomas that do not harbor gene mutations in BRAF, medications that activate the immune system by various mechanisms have been used with increasing success. Examples include ipilimumab, which targets a checkpoint of immune system regulation called CTLA-4; nivolumab, which activates the immune system via targeting of the PD-1 molecule; and pembrolizumab, another anti–PD-1 inhibitor.
JONS What are the current clinical trials available for patients with melanoma?
Dr Fox Clinical trials are extremely important for patients with metastatic melanoma, and ongoing trials can be found at clinicaltrials.gov. One such pilot study currently involves the combination of PD-1 blockade, CD137 agonism, and adoptive cell therapy for patients with metastatic melanoma. These trials push the boundaries of what is possible in terms of new treatments and drug development.
JONS What are the genetic testing guidelines?
Dr Fox Patients with melanoma inherently carry an increased risk of developing a second primary melanoma, and first-degree family members of patients with melanoma also carry a slightly elevated risk for developing melanoma. Several gene mutations have been described that can portend an elevated risk for melanoma and other types of cancer among families, including the CDKN2A/p16 in pancreatic cancer, BRCA2 in breast cancer, and MITF in renal cancer, to name a few. Genetic screening may be offered to patients who have a history of multiple melanomas or a personal or family history of pancreatic cancer, early onset breast cancer, or renal cancer. Many of these decisions are made based on clinical presentation and with careful consideration of the desires of the patient.
JONS Are there barriers to care unique to this patient population?
Dr Fox Every advanced melanoma case is unique, and each patient may carry their own set of challenges and barriers to care. Some patients lack adequate insurance coverage for newer medications. Others may struggle with transportation to and from appointments. Some need help managing the side effects of medications or with healing following surgery. Still others need significant emotional support as they cope with their diagnosis and treatment.
JONS How can oncology nurse and patient navigators help to support their patients with melanoma?
Dr Fox Managing melanoma, particularly advanced melanoma, involves an incredible amount of care coordination among many disciplines of medicine. Oncology nurses and patient navigators are critical in helping patients understand the various steps involved in their treatment, particularly as they go from doctor to doctor, clinic to clinic. They provide invaluable practical and emotional support to patients going through difficult treatments and can be remarkable advocates for their patients along the way.
JONS Thank you both for your time today, and on behalf of all of us at JONS, best of luck in your mission to improve care for those with melanoma.