January 2022
Vol. 1
NEWS
FROM THE FOUNDATION WORKING TO END MELANOMA
news about melanoma, updates on AIM’s research initiatives and activities, and featured stories of those impacted by the disease
TABLE OF CONTENT
President's Letter
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In Plain English: The Results of DreamSeq
03
Melanoma News: FDA Approves KEYTRUDA for Stage IIB and IIC Melanoma Patients
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How You Can Help
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We've Walked in Your Shoes
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Walking to Conquer Melanoma
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FDA Approves KIMMTRAK for the Treatment of Unresectable or Metastatic Uveal Melanoma International Advocate Spotlight One Survivor Finds Empowerment through Education and Supporting Others 2022 Walk Schedule
What is the Standard of Care for Stage II Melanoma Patients in 2022
09
The Role of Social Media in Patient Care
10
Visit
AIMATMELANOMA.ORG to download this current issue to your tablet
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Happy 2022! I hope this year is joyful and healthy for you and your family. I want to call your attention to three important research developments that were announced recently. The first is detailed in our latest In Plain English article by Dr. Kim Margolin. A study called DreamSeq has provided extremely valuable information on the treatment of advanced melanoma that is BRAF positive. Dr. Margolin clearly explains what the study found, why it’s important, and what questions remain. The second announcement was that the U.S. Food and Drug Administration (FDA) approved Keytruda (pembrolizumab), Merck’s anti-PD-1 therapy, for the adjuvant treatment of adult and pediatric (12 years and older) patients with Stage IIB or IIC melanoma following complete resection. The approval is based upon the results of a Phase 3 clinical trial involving 976 newly diagnosed patients in which Keytruda showed a statistically significant improvement in recurrence-free survival (RFS), reducing the risk of disease recurrence or death by 35% compared to placebo alone. Observation was previously the standard of care for Stage IIB and Stage IIC patients, even though the risk of recurrence for these patients is nearly as high as for patients with Stage IIIA and IIIB disease for whom treatment is recommended.
PRESIDENTS LETTER
You can read more about the Keytruda approval in this issue. You can also watch the video of the webinar we recently presented on What is the Standard of Care for Stage II Melanoma Patients in 2022? with Jason J. Luke, MD, FACP, director, Cancer Immunotherapeutics Center, UPMC Hillman Cancer Center, associate professor of medicine, Division of Hematology/Oncology, University of Pittsburgh School of Medicine. The third and most recent announcement is the approval by the FDA of Kimmtrak (tebentafusp-tebn) for the treatment of unresectable or metastatic uveal melanoma. Kimmtrak is the first and only FDA-approved therapy for the treatment of unresectable or metastatic uveal melanoma (mUM). mUM is a devastating diagnosis: The median overall survival after diagnosis is just one year. The approval is based on a study of 378 previously untreated patients randomly assigned to the Kimmtrak (tebentafusp) group or the control group who received one of three single agent treatments. Overall survival (OS) at one year was 73% in the tebentafusp group and 59% in the control group. In this issue, you can read more about the Kimmtrak approval. Please read the latest in our “How Can I Help?” series. Since so many of you ask this question (and we’re grateful you do), we describe different ways you can help in each newsletter. The goal is to assist you in finding the way to get involved that is best for you. We also have three stories to share. Tamara is from Australia and part of AIM’s MIPAC group. Ann Marie lives in California and is a member of our Peer Connect group. And Rhonda is part of the KDB Walk family that has raised so much money for AIM and so much awareness of melanoma in the state of Michigan. Thank you to Tamara, Ann Marie, and Rhonda for sharing your stories with the AIM community. Finally, on behalf of our whole organization, I want to express my thanks for your support of our mission throughout 2021 — please watch the video, Check out the second video, too, which wraps up our celebration of gratitude. In November, we asked our community to share what they are grateful for, and we posted many of these submissions online and on social media. Our staff also shared what they are grateful for, and we created a video to share their submissions with you. Enjoy! Sam Guild President AIM at Melanoma Foundation
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IN PLAIN ENGLISH THE RESULTS OF DREAMSEQ WRITTEN BY KIM MARGOLIN, M.D., FACP, FASCO
Patients with advanced melanoma—spread to other organs or grown too large in the lymph nodes to be safely and effectively removed surgically—that has a BRAF v600E mutation are most commonly prescribed one of two treatments: immunotherapy or targeted therapy. The immunotherapy most commonly given is the combination of a CTLA-4 and PD-1 blockade such as ipilimumab and nivolumab. Targeted therapy consists of inhibitors of two biochemical pathways in melanoma, BRAF and MEK, and there are three choices of such paired inhibitors—vemurafenib plus cobimetinib, dabrafenib plus trametinib, and encorafenib plus binimetinib—all with about the same efficacy but somewhat different side effects. For advanced melanoma patients and their oncologists, one question is critically important: What should be their first treatment, immunotherapy or targeted therapy?
Before now, the answer was unclear. But study results revealed in November 2021 have given us the answer: The best treatment regimen to start with for patients with advanced melanoma whose tumors carry a BRAF v600E mutation is generally a regimen of double immune checkpoint blockade with CTLA-4 and PD-1 antibodies. Certain patients may be better served by starting with targeted therapies, for example, those with a very high tumor burden who require a quick regression to achieve symptom relief or avoid other disease complications. In the rest of this article, we will explain the background, results, conclusions, and controversies about the DreamSeq trial, comparing in a randomized fashion the outcome of patients starting with double immunotherapy to that of patients starting with double targeted agents, both groups crossing over to the other therapy if their disease progressed (grew or cause worsening symptoms) on the first therapy.
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Certain patients may be better served by starting with targeted therapies, for example, those with a very high tumor burden who require a quick regression to achieve symptom relief or avoid other disease complications. In the rest of this article, we will explain the background, results, conclusions, and controversies about the DreamSeq trial, comparing in a randomized fashion the outcome of patients starting with double immunotherapy to that of patients starting with double targeted agents, both groups crossing over to the other therapy if their disease progressed (grew or cause worsening symptoms) on the first therapy. Before we explain the study and the results, let’s revisit the important characteristics of BRAF mutant melanoma and what we know about initial treatment with targeted therapy and initial treatment with immunotherapy.
BRAF Mutant Melanoma There are actually several types of BRAF mutation in melanoma and other cancers, but in this article, we will be referring to the most common form of BRAF mutation, termed v600E. This mutation leads to the melanoma cell having a hyperactivated BRAF protein that is responsible for much of the melanoma cell’s ability to grow faster, spread through the body, and be more oblivious to normal growthcontrolling pathways in the cell. As with most cancers, there is a subset of patients whose tumors carry a mutation so powerful that it can transform normal cells (in this case mole or pigment cells, called melanocytes) into malignant cells (melanoma) with only a few additional alterations of their genetic material, such as damage from repetitive exposure to the ultraviolet rays in sunlight. BRAF v600E is one of these powerful mutations. About half of all melanomas that arise on skin surfaces carry the BRAF mutation.
Targeted Agents: BRAF and MEK Inhibitors For BRAF mutant melanoma there are now one or more drugs, deemed “targeted agents,” that can produce remissions by blocking the action of the abnormally activated protein that results from the powerful mutation. These targeted agents are also called BRAF and MEK inhibitors. Fortunately, advanced melanoma is uniquely sensitive to the BRAF and MEK drugs. BRAF and MEK inhibitors are given orally every day, and they provide an initially very high remission rate (complete or partial reduction of all of the melanoma masses), reported in the 60%s, with additional patients having less dramatic remissions but experiencing some degree of tumor reduction and symptom relief. These drugs also have the very appealing characteristic of inducing rapid remissions, which is a strong advantage for patients with a large tumor burden and symptomatic metastases. Often, patients with a high tumor burden, a rapid pace of growth, and symptoms from their cancer are started on targeted drugs because of their rapid onset of action, with relief of symptoms and regression of metastases literally within days to weeks.
There are, however, some serious limitations to the targeted agents: Not only do they have dose-limiting toxicities in a substantial fraction of patients (and it is uncertain whether patients requiring a dose reduction will have the same likelihood of remission as those who can tolerate full dose), but the melanoma becomes resistant to therapy after an average of about a year. Based on retrospective, nonrandomized data, which can have many biases and inaccuracies (see more detailed explanation below), it has been reported that patients whose BRAF mutant melanoma grows back after a remission from targeted therapies and who then receive immunotherapy have a lower rate of remission than if the same immunotherapy drugs were given as first therapy. These reports of lower remission rates to immunotherapy in patients previously exposed to and relapsing on BRAF mutation-targeted therapy come from so-called historical or retrospective series, which are simple reviews of patient charts for their clinical characteristics and their treatment outcomes. The problem with retrospective series is that many factors that influence the outcome of therapy (or impact the patient’s prognosis, irrespective of the therapy they get) are not matched up between the groups of patients who started with targeted therapy and those who started with immunotherapy. Also, patients may not undergo tumor assessments (scans, physical examinations, laboratory tests) at the same intervals following the start of therapy, so the calculation of how long they were in remission may be influenced by when they are evaluated. New sites of metastasis can also occur that shorten a remission and threaten the patient’s survival, such as metastasis to the brain, which isn’t always looked at when other tumor assessments are performed.
Immunotherapy with CTLA-4 and PD-1 Blockade Immunotherapy using CTLA-4 plus PD-1 blocking antibodies given intravenously is considered to be the optimal treatment for advanced melanoma because it has been shown to provide very long-term remission in those patients who respond well. As with targeted therapy, one limitation is that patients must be able to tolerate the combination, which is likely to cause immune-related inflammation of many different organs. It is very difficult to determine in advance which patients will not be able to tolerate this combination, other than those with pre-existing major medical illnesses. Even advanced age by itself has not turned out to be a predictor of toxicity or poor outcomes. Immunotherapy, while providing very long-term remissions in patients who respond well, tends to take longer to start working than targeted therapy, so it has not been as appealing to start with in patients with BRAF mutant advanced melanoma, particularly when it seems to be growing fast. However, the retrospective data referred to in the preceding section also showed that despite lower overall remission rates for immunotherapy and slower onset of action, the ultimate benefit of immunotherapy seems to be greater than that of targeted agents, which rarely provide durable remissions or the potential for cure.
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How to Best Answer the Question
It has long been known and accepted that the only way to obtain adequate and balanced data that allow for valid conclusions to be drawn is to perform a prospective, controlled, randomized trial. The definition of these critical terms is that the trial does not involve collecting data obtained in the past from patients who were not enrolled in the trial when they received treatment and underwent tumor assessments (prospective). Rather, patients who provide their informed consent are randomly assigned (by a computer using random number generation) to one of the treatments, and all patients in each treatment group undergo the same treatment, dose, schedule, and tumor assessments and intervals (randomized, controlled). Sometimes factors that might influence the outcome other than the treatment itself—such as a blood test reflecting tumor burden or a subtype of melanoma—are built into the computerized randomization system to assure that both treatment groups are balanced for such factors (stratified). Informed consent means that patients in clinical trials must agree to the details of the procedures and are, to the extent possible, informed of the expected risks and benefits of all elements of treatment, whether standard or investigational. In some trials, such as the one detailed below, the treatments were both standard (already approved by the U.S. Food and Drug Administration to treat melanoma), but the trial question was about which regimen, started first, conferred the best survival. Patients whose melanoma grew during the first assigned therapy were then crossed over to the opposite therapy as their second-line regimen.
The DreamSeq Trial In 2011, Dr. Michael Atkins at Georgetown Lombardi Comprehensive Cancer Center, together with selected colleagues in the melanoma field, began what would turn out to be a very long but criticallyimportant quest to define the optimal first-line treatment for patients with advanced melanoma that carried a BRAF mutation. As the trial was moving towards activation, the field changed dramatically for both BRAF-directed therapy and immunotherapy: In the case of BRAF, it was found that a two-drug combination worked better, because the addition of a MEK inhibitor reinforced the BRAF inhibition and prevented secondary non-melanoma skin cancers that sometimes Magazine Distribution emerge on BRAF-only treatment. In the case of ipilimumab, the addition of nivolumab providedthrough a far more regimen, Magazines can be distributed the potent mail, through sales comparable to the BRAF plus MEK combination. Ultimately, the trial by newsstands, bookstores, or other vendors, or through free ofdistribution two targeted drugs versus twolocations. immunotherapy drugs was opened at selected pick-up The subscription models for distribution into three main inbusiness July, 2015, and although accrualfall started slowly, thecategories. level of interest in this important question accelerated its momentum. By late In thethe paid circulation model, theCommittee magazine deemed is sold tothe readers 2020, trial’s Data Monitoring patient for a price, either on a per-issue basis or by subscription, where number sufficient to answer the question with statistical significance, an annual fee or monthly price is paid and issues are sent by which means the numbers would not have come out as they did post to readers. merely by chance. Non-paid publication means that there is no cover price and The trial’s were reported by Dr. Atkins dispensers, in a specialairline ASCO issues areresults given away, for example in street in-flight magazines, or included with other products or (American Society of Clinical Oncology) session in November, 2021: publications. Controlled circulation thetreatment model used by many The survival rates of patients in the is two groups were trade magazines distributed only tofound qualifying often better for compared at the two-year mark and to bereaders, substantially free determined bypatients some form survey. for theand immunotherapy thanoffor the targeted therapy
patients (72% versus 52%), thus establishing the superiority of immunotherapy over targeted therapy as the first treatment for patients with advanced melanoma carrying a BRAF mutation.
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18 We will look forward to Dr. Atkins publishing his data for the entire scientific and clinical communities in the near future. Many questions remain without complete answers, such as: Many patients are currently treated with a single immunotherapy drug (PD-1 antibody such as nivolumab or pembrolizumab) rather than two combined immunotherapy drugs (ipilimumab plus nivolumab, as in this study). For these patients, will the effects of immunotherapy using only one drug be as much superior to targeted therapy as immunotherapy with two drugs? Will any of the newer (still experimental) immunotherapy drugs be more effective and less toxic than the currently-approved combination of ipilimumab plus nivolumab? Is there a way to safely combine or more cleverly sequence the targeted antimelanoma drugs and the immunotherapy drugs to better exploit the benefits of each class of agent?
Researchers are beginning to answer the second question: There are already very promising data for a new antibody against an immune checkpoint called LAG3, which seems less toxic and at least as effective as the ipilimumab plus nivolumab combination. That combination is likely to be approved by the US FDA soon, which will be encouraging but may raise questions about how it compares with previous regimens. And researchers are trying to answer the third question, too: In a prior issue of In Plain English, we discussed combinations of immunotherapy with targeted therapy and the evidence of some superiority of these combinations over targeted therapy alone. However, there are substantial toxicities of combining three drugs simultaneously, so few oncologists offer them routinely to these patients. There are also plenty of data suggesting that targeted therapy agents can enhance the responsiveness of melanoma cells to immunotherapy, so many investigators are performing clinical trials to probe this question by studying sequences that involve switching from targeted to immunotherapy before the melanoma becomes resistant to targeted therapy. These are exciting times for melanoma therapy, and it is almost impossible to keep up with the pace of new developments, but we will continue to bring these advances to the melanoma information-seeking public through our In Plain English articles.
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MELANOMA
news
FDA Approves KEYTRUDA for Stage IIB and IIC Melanoma Patients On December 4, 2021, Merck announced that the U.S. Food and Drug Administration (FDA) has approved Keytruda (pembrolizumab), Merck’s antiPD-1 therapy, for the adjuvant treatment of adult and pediatric (12 years and older) patients with Stage IIB or IIC melanoma following complete resection. The approval is based upon the results of a Phase 3 clinical trial involving 976 newly diagnosed patients in which Keytruda showed a statistically significant improvement in recurrencefree survival (RFS), reducing the risk of disease recurrence or death by 35% compared to placebo alone.
Before this approval, observation was the standard of care for Stage IIB and IIC patients, even though the risk of recurrence for these patients is nearly as high as for patients with Stage IIIA and IIIB disease for whom treatment is recommended. “Patients will appreciate this new treatment option after a Stage IIB or IIC diagnosis. “Melanoma patients will welcome this treatment option,” said Samantha Guild, President of AIM at Melanoma.
“Before yesterday’s approval, a Stage IIB or IIC diagnosis was difficult for patients because they were told they have a high risk of recurrence, yet they were also told there is no effective FDA approved drug treatment available to help reduce their risk. With yesterday’s approval, that situation has changed for this patient population.” Additionally, Merck also announced that the FDA also expanded the indication for Keytruda as adjuvant treatment for Stage III melanoma following complete resection to include pediatric patients (12 years and older).
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“This approval is a tremendous advancement for patients 12 years and older with Stage IIB and IIC melanoma. It provides a new option for these patients—one that can help reduce the risk of their melanoma returning.”
Jason J. Luke, MD, FACP, director, Cancer Immunotherapeutics Center, UPMC Hillman Cancer Center, associate professor of medicine, Division of Hematology/Oncology, University of Pittsburgh School of Medicine
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A special presentation with guest, Jason J. Luke, MD, FACP, director, Cancer Immunotherapeutics Center, UPMC Hillman Cancer Center, associate professor of medicine, Division of Hematology/Oncology. FDA Approval of KEYTRUDA for Stage IIB and IIC Melanoma Patients; What did the clinical trial show? What does the treatment entail? Are there other clinical trials for stage 2B and 2C being done right now? How do you determine what is the best option for you? 09
Social media has the potential to provide both benefits and harm to cancer patients who turn there looking for information and support. Can the psychosocial support and engagement that a patient finds online outweigh the risks of misinformation and anxiety of information overload? How does social media impact patient care? What role does social media play in healthcare? During this conversation, Drs. Don Dizon and Ray Liu will answer these questions and discuss how patients can distinguish pearls from duds online.
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HOW YOU CAN HELP
SUPPORTERS GUILD Fortunately for AIM, so many of you call or write us and ask this question. And our general answer is always get involved: volunteer, raise funds, give funds, share our messaging, join a Walk, and so on. Then we try to help you get involved in a way that pleases you, and we write newsletter articles like this one to explain specific ways that might be of interest to you. This month we’d like to introduce you to one of the easiest ways to give, which is by joining the Supporters Guild, AIM’s monthly giving program. For those who want to give— large amounts or small—it’s simple. You sign up once —it takes less than five minutes—and we do the rest. You get to spread your gift over time with automatic, recurring contributions. You choose how much to give and for how long, and you can change the amount or cancel at any time. But what is so simple for you is transformative for us, especially when you consider the power of the Guild as a whole.
The Supporters Guild creates a stable source of funding for AIM so your donation dollars can make a bigger impact on scientific research and on the lives of melanoma patients. The Supporters Guild is named in memory of Charlie Guild, who lost her battle with melanoma in 2003. When Charlie was diagnosed with melanoma just nine months earlier, there was very little information available for newly diagnosed patients and no successful treatments. Before Charlie passed away, her desire was to ease the pathway for others battling this disease, which in turn led to the creation of AIM at Melanoma Foundation. Your monthly donation helps us fulfill Charlie’s vision. Supporters Guild members receive 20% off any purchase at our online store that sells melanoma awareness apparel. We’d love to have you as a member of the Supporters Guild. Please join us!
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WE'VE WALKED IN YOUR SHOES
peer connect Become A Mentor As a survivor or caregiver, you know better than anyone else what it is like to go through treatment, how to deal with side effects, and how to manage all the emotions— highs and lows—that come with a melanoma diagnosis. Share your experience and expertise by volunteering as a Peer Connect mentor to another survivor or caregiver. Request a Mentor If you have recently been diagnosed with melanoma, you may be experiencing a wide range of feelings and emotions. Our goal is to provide support to help ease the anxieties, stresses, and fears that may arise during your melanoma journey.
In this program, you are matched with a trained, volunteer peer mentor who has “walked in your shoes” as a melanoma patient — ideally, someone who was diagnosed with the same stage of melanoma. The peer mentor provides one-on-one support, a listening ear, and guidance in a safe, nonjudgmental, and confidential environment.
our peer to peer support program 12
walking to conquer melanoma
/ WRITTEN BY MARA KLECKER
Even when the pandemic forced the KDB Melanoma 5k Walk/Run to go virtual in 2020, Mike’s Miracle Workers donned their red shirts and laced up their shoes to walk 3.1 miles in memory of Mike Smith, who died of melanoma in 2015 at the age of 51.
Several members of the team kicked off that year’s walk in his wife Rhonda Smith’s front yard in Wayne, Michigan, while other team members walked in their own neighborhoods in New York, Virginia, and California. Though the virtual format dampened some of the traditions of the annual KDB Walk–which has been held in Michigan since 2006 and has raised more than $674,000 for AIM at Melanoma–it also allowed people to participate from all over the country. “I think my husband would be very proud,” Rhonda said of her team, which has raised more than $10,000 for AIM since joining the walk in 2017. Mike and Rhonda were married for 26 years. They first met at a high school prom, but each had brought a different date. Five years later, they were set up on a date by their parents. “We were together from then on,” Rhonda said.
Mike was a loving and involved father to his two children. He coached his son’s baseball team and was the dad who yelled encouragement and advice (often louder than the coach) from the sidelines of his daughter’s volleyball games. “He was a happy-go-lucky guy, always in a good mood,” Rhonda remembers. He had a wicked sense of humor and loved a good game of poker. Mike was also dedicated to service. After serving in the military, he became a police officer and eventually retired as a sergeant. His philosophy in life was to live for the day. He often said life was too short to waste time worrying. He was first diagnosed with melanoma in 2008 after a mole on his stomach turned black and started itching. Rhonda encouraged him to go to the dermatologist, who removed it the same day and scheduled him for checkups every six months.
Three years after having that mole removed, Mike found a lump in his groin. Doctors removed the tumor and lymph nodes from his right leg, but about three months later, scans showed the cancer had spread throughout his body. For the next four years, Mike underwent targeted therapies and immunotherapies and participated in two clinical trials, all of which caused severe side effects. Still, Mike worked hard to hide his disease and continued working until the last year of his life. “Up until the very end, a lot of people didn’t even know he had melanoma,” Rhonda said. “He didn’t want people to feel they needed to do anything for him, even though he would do anything for anyone else.” That’s why Rhonda found herself looking for a way to give back after his death.
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“Mike was such a giving person, I wanted to do what I could to help keep his memory alive. I thought if I could also do something to help prevent any other family from going through such a loss, then that was my purpose.”
Mike and Rhonda’s daughter was a freshman in high school when Mike passed away. She wanted to honor his love and support of her volleyball team, so she and Rhonda worked with the coach to create the “Coach Dad Scholarship” to provide the recipients with funds for equipment or further education. By 2017, Rhonda was looking for more ways she could fundraise for melanoma awareness and research. “Mike was such a giving person,” Rhonda said. “I wanted to do what I could to help keep his memory alive. I thought if I could also do something to help prevent any other family from going through such a loss, then that was my purpose.” That’s when Rhonda first found out about the KDB Walk. Within a few months of reading about the fundraising event, Rhonda had assembled the “Mike’s Miracle Workers” team, raised more than $1,500 and launched a tradition for those who loved Mike. The following year, she worked closely with her core team and raised more than $2,000. and In 2019, they pulled in more than $3,800 from three fundraisers, including a car wash and a cabaret performance. They raised another $2,300 in 2020 and more than $1,100 in 2021. “Everyone really came together,” Rhonda said. “When we lost Mike, it was such a major loss suffered by everyone who knew him.”
Mike’s Miracle Workers was a way those people could honor the man who gave so much of himself. In 2019, Tricia Edwards, the founder of the KDB Walk, asked Rhonda to be on the event’s planning committee. Rhonda’s answer was an easy yes. “It is such a moving event where you see so many people going through the same thing,” Rhonda said. She now counts many of the other organizers of the walk among her closest friends. “I’m so glad Tricia created this,” she said. “It’s sad to think about what we do all have in common. So many people do not understand what a beast melanoma can be–it’s what brought us all together. But so much good has come out of such a terrible thing.”
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MELANOMA
news
FDA Approves KIMMTRAK for the Treatment of Unresectable or Metastatic Uveal Melanoma On January 26, 2022, Immunocore announced that the U.S. Food and Drug Administration (FDA) has approved KIMMTRAK (tebentafusp-tebn) for the treatment of HLA-A*02:01-positive adult patients with unresectable or metastatic Uveal Melanoma. KIMMTRAK is the first and only FDA approved therapy for the treatment of unresectable or metastatic uveal melanoma (mUM).
FDA approval was based on the results of a phase 3 clinical trial in which KIMMTRAK showed statistically and clinically meaningful overall survival benefit for mUM patients. A total of 378 previously untreated patients were randomly assigned to either the KIMMTRAK (tebentafusp) group (252 patients) or the control group (126 patients). The control group received single-agent treatment with pembrolizumab (82% of control patients), ipilimumab (13%), or dacarbazine (6%). Overall survival (OS) at one year was 73% in the tebentafusp group and 59% in the control group.
Uveal melanoma is the most common intraocular cancer in adults, and about 50% of people with uveal melanoma will develop metastases. The prognosis for mUM patients is very poor, with the median overall survival after diagnosis being just one year. Before today, there were no approved systemic treatment options for mUM patients. KIMMTRAK is also the first T cell receptor therapeutic to receive regulatory approval.
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“KIMMTRAK offers hope for patients and families suffering from a devastating disease. Now, with KIMMTRAK’s approval, it’s the first time we can tell our mUM patients and families that there is a systemic treatment available that has been shown to extend survival.” Marlana M. Orloff, MD one of the study investigators Thomas Jefferson University Hospital
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international advocate spotlight
Two-thirds of Australians will be diagnosed with a
Tamara’s own experience of being diagnosed with
type of skin cancer by the time they are 70.
advanced melanoma in 2015 led her to establish
Despite the prevalence, Australians still don’t take
MSCAN. Having seen her general practitioner with
skin cancer seriously enough, says Tamara Dawson,
abdominal pain, she was shocked to learn she had
a Stage IV melanoma survivor.
cancer that had spread to her liver. The next nine months were rough as she underwent surgery,
Tamara hopes to change that. After years of
radiation therapy, and immunotherapy, which she
policy work in Australia, Tamara launched the
continued every few weeks for a couple of years.
Melanoma and Skin Cancer Advocacy Network (MSCAN) in 2020.
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Australia's Tamara Dawson written by Mara Klecker Her own experience navigating the healthcare system helped her recognize the gaps in services for melanoma patients, from the moments after that first diagnosis
written by Mara Klecker
through to the unique needs and challenges of melanoma survivors.
“I remember looking around a busy hospital clinic and thinking, ‘Wow, all these families are going through something like this,’” she said.
Tamara was working in trade policy and wondered if she could use her own understanding of policy and advocacy to make a difference for Australians facing diagnoses like hers.
“There was just this enormous learning curve that I felt when I was diagnosed,” she said. That was true for her family too – particularly because t immunotherapy was very new, and they weren’t sure what side effects it could bring.
The incredible new treatment options for advanced melanoma – immunotherapy and targeted therapy – also bring about a different set of needs in the melanoma community, Tamara said.
“There was this whole new group of people like me who started treatment after a tough diagnosis and then survived and went on to live pretty normal lives. We work, we spend time with our family and friends, we contribute to our communities,” she said. “But that presents a whole new need for resources for survivorship.”
So Tamara set out to fill that need. She wanted to find better ways to provide for a patient’s wellness, not just treat their illness.
“In Australia, I felt there was a big gap without an independent, consumer-led, national nonprofit for both melanoma and non-melanoma skin cancers, especially considering the rates of skin cancer we have here,” she said.
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There was just this enormous learning curve that I felt when I was diagnosed.
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We want to be a network, we want to collaborate,” Tamara said. “We’re so much stronger together when we partner in Australia and internationally.
After many inspiring discussions with clinicians,
So far, MSCAN’s podcasts–which include conversations
researchers and patients, Tamara decided to form
with patients and physicians–have proved popular, and
MSCAN. Since its start in 2020, it’s continued to grow,
the organization has a partnership with the Melanoma
and Tamara resigned from her policy job to focus on the
and Skin Cancer Nurses Organization.
organization full time.“It’s gone so incredibly well and exceeded my expectations already,” she said.
MSCAN is a part of The Melanoma International Patient Advocacy Coalition (MIPAC), a group founded by AIM to
Each of MSCAN’s board members has also been
collaborate with organizations across the globe in their
affected by a melanoma diagnosis, which was important
efforts to increase awareness and change public
to Tamara as she created the nonprofit she wished
perceptions of melanoma, empower melanoma patients
existed when she started her melanoma journey.
to take an active role in their care, and effect change in regulatory policies to optimize treatment and care.
“When I was first diagnosed, I wanted to know there was an organization that had my back,” Tamara said. “I
“We really value our partnership with AIM,” Tamara said.
wanted people who just ‘got it’ and had been through it,
“MIPAC is an incredible group and an opportunity to
and were advocating for patients’ needs.”
share ideas about what works. I know it’ll help make sure our voice of advocacy in Australia is stronger and more
MSCAN’s three pillars are advocacy and influencing healthcare policy, innovation in care and research, and information and resources.
well-informed.
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ONE SURVIVOR FINDS EMPOWERMENT THROUGH EDUCATION AND SUPPORTING OTHERS WRITTEN BY MARA KLECKER
Ann Marie received her first-ever physical in 2019 at the age of 53. She’d lost her father to Alzheimer’s and her 59-year-old sister to non-small cell lung cancer earlier that year and decided she should pay attention to her own health. At the end of her inaugural physical, the doctor asked Ann Marie if there was anything else she was worried about. That’s when she asked the doctor to look at a large mole on her buttocks. She was hardly worried about it – it’d been there since at least 1995, Ann Marie knew, because she remembered the delivery nurse asking about it when she was giving birth to her first daughter. Shortly after giving birth, Ann Marie had the spot biopsied and found out it was benign. But it was large and raised enough to show when she wore a swimming suit or even tight workout leggings, so she was hoping it could be removed. Once the spot was removed, Ann Marie was ready to forget about it. But then her doctor called. Ann Marie was just a few minutes away from leaving for the airport to visit her daughter in Utah when the call came in. The doctor said the mole was not benign and was, in fact, melanoma.
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“SHE TOLD ME NOT TO GOOGLE IT, THAT RAISED ALL THE RED FLAGS.” But Ann Marie was determined to not worry or overburden her family, especially during the visit with her daughter. “I just kind of tried to put it out of my mind for a bit,” she said. She did, however, send her lab results to a friend, who stayed on the phone with her and started making recommendations of surgeons and treatments to look into. “Basically, from that point, everything happened to me,” Ann Marie said. “I felt like I didn’t have any control.” In those first few appointments with oncologists, Ann Marie was in a fog. She couldn’t focus and was too shaken to start researching or advocating for herself. “I was so disappointed in myself,” she said. “I always pictured myself being empowered during a trial like that. I thought I’d take charge, but I just wilted.” That feeling is the reason Ann Marie jumped at the chance to be a mentor with AIM at Melanoma’s Peer Connect program. She didn’t want others to feel as lost and as lonely as she did in the days after her diagnosis. "I had this incredible support network of friends and family around me, but all I wanted to do was talk to other people who had been through what I was going through,” she said.
Ann Marie was diagnosed with Stage IIB melanoma and underwent surgery to remove the tumor and then a yearlong, double-blind clinical trial of pembrolizumab (Keytruda), which has since been FDA approved for treating Stage IIB and IIC melanoma. She’s been NED for about two years, but she still attends all of AIM’s webinars to find out about new research and treatments. That’s how she empowers herself in the ways she wishes she could have in those first few days after her diagnosis. Even though I’m two years out and NED, melanoma is something I think about every day,” she said. “Actively staying involved in the solutions (like the clinical trial and keeping up on the webinars) is about being armed. It makes me feel like if this comes back, I’m going to have the best shot at surviving it because I’ve been educating myself.” Those lessons about education and empowerment are ones she hopes to pass on to the mentees she is paired with through the Peer Connect program. Both of the women she’s mentoring faced similar diagnoses to hers and were struggling with some of the same fears and anxieties she went through. “I got so much stronger when I found hope,” Ann Marie said. “So that’s what I feel I can help provide to others. You don’t even know how comforting it is to have somebody say, ‘I’ve been there, I know what that feels like.’ It’s amazing to be able to give that to someone who needs to hear that.”
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STEPS AGAINST
MELANOMA 2022 For over a decade, AIM at Melanoma’s walks have been a symbol of hope and support for our community. We have walked in rain, wind, sleet, and sunshine, always with the same goal in mind, to fund lifesaving melanoma research.
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WHY WE WALK Many Steps Against Melanoma participants walk to celebrate their own victory over melanoma. Others walk to honor and remember those who have overcome melanoma, are currently fighting it, or are no longer with us. Please join us in the fight to #endmelanoma.
4/3/2022 Rowayton, CT
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6/11/2022 Salt Lake City, UT
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9/25/2022 Springfield, MO
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10/8/2022 Louisville, KY
5/21/2022 Galveston, TX
10/9/2022 Milford, MI 10/15/2022 Houston, TX
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