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If you have done a trail run or a bike race in North Vancouver, there’s a good chance you have seen a Save Your Skin jersey on somebody; a white jersey covered with Kathy’s handprints in a yellow, red and orange palette, it definitely stands out. Save Your Skin is fortunate enough to have a community of local runners and bikers who wear these eye-catching jerseys in both Vancouver and international events, with the hopes of supporting the foundation and raising Melanoma awareness in the athletic community. The creation of the jerseys was inspired by Rosemary, Kathy’s sister. We had a chat recently about the origins of the jersey, and how an outfit has helped Save Your Skin connect to the North Vancouver athletic community.

The first thing Rose wanted to share with us was how much she loved the aesthetics of the jersey. “The jerseys are bright, colourful, and they’re full of life and energy,” she said, smiling, “Positive, positive energy.” The colours of the jersey certainly are uplifting in dark trails, and they attract attention. “It brings up a lot of questions,” Rose told us, noting that many people do trail events for the sake of a cause. “Even if they haven’t been affected by it personally, most people just want to help with anything, around any form of cancer. Because every household is dealing with that.” Skin cancer is especially present in the outdoor athletic community because, as Rose puts it, “they expose themselves to the sun a lot, by doing things they want to do.” The response that this community has had to the jersey is evidence of that connection. Rose has met several people in the trails who have gone on to purchase jerseys or become involved with Save Your Skin, and likewise she has learned about other organizations through the running community.

This is not the only way the running community has helped Save Your Skin; it was there before Save Your Skin even existed. When Kathy and Rose began to talk about wanting to start a foundation, Rose’s running friends were eager to help out. Obviously, their next step was to start, or sponsor, a run. They approached Heather MacDonald, a member of Mountain Madness and organizer of the local Phantom Run, about creating an event. She informed them that they wouldn’t be able to do much without being an accredited organization, which prompted the creation of Save Your Skin! The jerseys were designed soon after, and were first worn by Rose and her running tribe in the 2006 Phantom Run. They have since been worn in the Ironman Canada, BC Bike Race, the GranFondo, the Ride to Conquer Cancer, several Vancouver Marathons, the Dirty Duo, the Knee Knacker, the Trans Rockies run, and the Boston, Seattle, Napa Valley, Maui and Edinburgh marathons.

Rose says that her first time crossing the finish line of a run while wearing her jersey, and hearing the announcer talk about Save Your Skin, was a surreal moment. “All of a sudden I wasn’t just another participant in a run, I was linked to somebody I loved so much who was dealing with something newsworthy. It was so big.” In a position that made her feel helpless, being able to don the Save Your Skin jersey and spread the word made Rose feel like she was able to help in some way.

Rose plans to wear her jersey in every event she runs in for the foreseeable future, as the jersey connects two of the great loves of her life; running, and her sister. Running is an especially important activity for Rose, as it was the perfect distraction during Kathy’s battle with Melanoma. “Honestly,” she told us, “when Kath was sick, one of the only things that helped me through that process was being out in the middle of our beautiful forests and being able to get away for a little bit, and just sort of be reminded to put everything into perspective. You know, when you’re out in the forest, with the rivers, and the moss, and the ferns, it does put life into perspective. How lucky we are to be here, even for a short period of time.” Rose acknowledges how lucky she is to live in such a beautiful place with her frequent running, and acknowledges how lucky she is to still have her sister by wearing the Save Your Skin jersey when she does it.

Rose will be running Sun Mountain Trail run 80 kilometre Ultra Marathon in the Cascade mountain range of Washington state and also look out for the Save Your Skin jerseys in the upcoming BMO Marathon, and the Vancouver Sun Run!

Click here to make a donation to the Save Your Skin Foundation today!

Written by Taylor

The Save Your Skin Foundation is pleased to announce the publication of the most recent edition of Lettres en main (which translates to ‘Letters in hand’ in English) – in this volume (no. 21), the topic is ’Skin’ in all its aspects and particularities. As a part of the text is devoted to education about skin cancer and the importance of sun protection and avoiding tanning salons, the Save Your Skin Foundation wished to help support the initiative.

Lettres en main is a popular Quebecois literacy group, which operates in Montreal with the main objective to help combat illiteracy. Among its many activities, the association develops and disseminates educational materials through its collection Les nouvelles connaissances usuelles – or ‘New common knowledge’ in English. The most recent edition (volume 21) highlights ‘skin’, in which the Save Your Skin Foundation contributed.

These booklets, designed primarily for people in a French literacy program, are written in simple vocabulary, in a fairly large print and include many illustrations to make them easy, accessible to many, and enjoyable to read. They touch on a variety of topics allowing readers to improve their reading skills while developing knowledge on topics of interest about every day life, such as environment, diet and the human body…

If you have a project related to skin cancer awareness and education, please contact us. We’d love to explore every opportunity for a collaboration or a partnership. Just send an email at kfm@saveyourskin.ca or send us a message via our Facebook page.

Yervoy moves another step towards being available for newly diagnosed Canadian patients and new treatment Opdivo receives FDA approval

VANCOUVER (January 6, 2015) – 2015 is starting with good news and hope for melanoma patients thanks to two major milestones for ground-breaking melanoma immunotherapies. The Save Your Skin Foundation (SYSF) is very pleased to learn that a new treatment, Opdivo (nivolumab), has been given its first approval in the United States to treat advanced melanoma in patients who have not responded to other treatments. At the same time, the original melanoma immunotherapy, Yervoy (ipilimumab), has moved along another step in the process of becoming available as a first treatment for newly diagnosed Canadian patients.

Health Canada approved Yervoy for first line use earlier this year. The pan-Canadian Oncology Drug Review (pCODR), has now issued a positive recommendation for provinces to pay for Yervoy for newly diagnosed advanced melanoma patients. Until now, patients have had to try and fail on older treatments before governments would pay for Yervoy.

“Being able to try an immunotherapy such as Yervoy right after diagnosis is a big step forward for patients,” added Kathy Barnard. “The earlier patients can try the new therapies, the greater the chances that they will be strong enough for the treatment to be effective. We hope provinces will now move quickly to accept the pCODR recommendation to make Yervoy available for newly diagnosed advanced melanoma patients. Every melanoma patient should have an equal chance to survive.”

The latest treatment, Opdivo, like Yervoy, is also an immunotherapy, meaning it works by stimulating the body’s own immune system to fight and kill cancer cells. However, Opdivo stimulates the immune system in a different way than Yervoy. This is what makes it so promising for those patients who won’t respond to Yervoy or other immunotherapies or when those treatments no longer work. SYSF is very hopeful that the FDA approval means that Opdivo will soon be approved in Canada.

“This is wonderful news for people with advanced melanoma and their families because it offers additional hope in dealing with this disease. Just years ago, patients were surviving on average six months. Today the word survivorship is a reality; it’s truly amazing.” said Kathy Barnard, Save Your Skin Foundation President and Founder and an 11-year survivor of melanoma thanks to participating in a clinical trial for Yervoy. “Melanoma treatment has evolved so dramatically over the past few years. The new treatments literally are giving melanoma patients a chance to live and survive. I know because I’m living proof of it.”

About Melanoma in Canada
Every year, thousands of Canadians are diagnosed with melanoma, with the incidence of the disease increasing faster than that of any other cancer. Melanoma is a deadly form of skin cancer characterized by the uncontrolled growth of pigment-producing cells (melanocytes) located in the skin. One in 74 men and 1 in 90 women are expected to develop melanoma during their lifetime. Melanoma is clearly visible on the skin, and 90 per cent of melanomas are caused by exposure to UV light, including tanning beds.

About the Save Your Skin Foundation
The Save Your Skin Foundation is a Canadian not-for-profit foundation. Through events and other initiatives, the Foundation focuses on: raising funds for education and awareness, providing emotional and financial support to those dealing with melanoma and non-melanoma skin cancers, and on supporting the ongoing research and treatment of skin cancer – especially melanoma. For more information, please visit www.saveyourskin.ca.

Media Contact:
Madelynn Festing
kfm@saveyourskin.ca
604.734.4223

After Merck Keytruda, BMS’s Opdivo showed very good results in a trial where it improves survival over chemotherapy. About 73% of melanoma patients receiving the Bristol-Myers drug, nivolumab, were still alive one year after the start of treatment, compared with 42% of those receiving chemotherapy dacarbazine, according to results published online by the New England Journal of Medicine and presented at the Congress in Zurich. It looks like immunotherapy now has centre stage in advanced melanoma treatment.

Have access to the original article published in the New England Journal of Medicine here.

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You may have read the Save Your Skin Foundation’s story here…but, as you probably know, everyone has their own story – and Founder and President, Kathleen Barnard’s niece has kindly shared one of her own. Thank you for your inspiring and beautiful story Taylor!

“In May of 2003, I wanted to be an astronaut; a pretty common dream for a child of ten. A less common aspect of my “studying” to be an astronaut was that it was all practical. On any given night you could find myself and Kathleen Barnard – my aunt, neighbour, and favourite person in the world – on her back deck, drinking hot chocolate while I pointed out constellations to her. Also in May of 2003, Kathleen was diagnosed with stage three malignant melanoma.

Melanoma is the most aggressive form of skin cancer, the result of a life spent outdoors. For Kath, this was often on a baseball diamond, either playing or coaching the team of myself or one of her two sons. The cancer manifested itself in a tumour on Kath’s arm, the size of which my family (myself excluded, as I was ten and oblivious) had been watching anxiously. Upon hearing the news, I can assume that Kath was as flawlessly optimistic as she has been every day since. I can confidently say that the only hope or happiness any of us had in that time was in watching Kath’s determination to beat the disease, and her strength has inspired all of us to be stronger in our own lives.

The first form of treatment Kath would undergo was Interferon, which involves a self-injection three nights a week for a year, accompanied by the side effects of hair and weight loss, and flu-like symptoms. Not a process for the faint of heart. Here, I should mention that I was only told about Kath’s illness after she had begun receiving treatments, when her physical changes were going to become too obvious to ignore; the fact that I had no idea that this was going on before she told me, demonstrates how strong she was, continuing to live her normal life by going to work and continuing to coach my softball team for as long as she could. After her year of treatment, we received the news that she was cancer free, and all of us, Kath especially, looked forward to resuming our normal lives.

A year later, in the May of 2005, one of Kath’s checkups revealed a tumour on her lung. Not only had the cancer returned, but had advanced to stage four: the most aggressive stage. This time, Kath underwent Chemotherapy. I was growing older and more terrified at the prospect of losing my aunt, and my life essentially consisted of crying in bed, then crying in my mom’s bed, then getting up and crying at school. Kath’s attitude, however, juxtaposed all of ours; she hosted family dinners and trips to Whistler, getting us all together as much as she could. She would always have some surprise up her sleeve, such as bringing a collection of children’s musical instruments to make a family band (I’m not joking), or christmas crafts for us to do in Whistler. Even while there was talk of removing her entire lung as the tumour grew, and as her cancer metastasized to her kidney, liver, bones and ribs, she never lost her smile, or showed us how exhausted she must have been.

After extensive and desperate google searches, my cousin found a Doctor in Edmonton who was running a trial drug called Interleukin. The drug had showed positive results in 16% of trial subjects at that point, and no one had yet survived the entire treatment. The trial required Kath (and another member of our family-her husband, one of her sons, or my mom) to fly to Edmonton every second week to spend the full week in intensive care, receiving the drug though an IV every eight hours. While I never went with Kath (though I donated all my pocket money to her flights!), I gathered that the side effects of this treatment included nausea, weight gain, a rash, and low blood pressure. To help herself persevere through the treatment, Kath would write something on each bag to inspire her: things like the names of her family, friends, the girls on my softball team, future vacation destinations. She never complained; on her tongue instead were a million reasons her fight was worthwhile.

After four rounds of Interleukin, Kath was finally declared to be in remission. However, instead of trying to push the thought of cancer out of her mind, Kath and her amazing sister (and my mom) Rosemary decided to start the Save Your Skin Foundation. The fact that you are reading this anecdote right now proves that Kath’s enthusiasm paid off, and the foundation is successful. The Save Your Skin foundation seeks to promote the prevention of skin cancers, such as melanoma, via education and awareness. It also helps provide families struggling with the disease with personal and financial support in finding trial drugs. In short, the Foundation tries to prevent other families from going through what our own family did.

Unfortunately, the struggle was not over for Kath. In 2007, a CT scan showed the presence of a tumour in her small intestine. It was stage four malignant melanoma again, and Kath was immediately hospitalized and given an invasive surgery to relieve the pressure on her intestine. Her surgery and re-starting treatments did nothing but increase Kath’s drive to make sure the Save Your Skin Foundation was a success. She began putting together a Save Your Skin booth at local events, run by our family and friends, to get the Foundation out there as much as possible.

By February of 2008, Kath was flying back and forth between Edmonton and Vancouver again, but this time every twenty-one days and to receive the new trial immunotherapy Yervoy. She had been given four rounds of Yervoy when a new tumour was discovered in her kidney – an organ that she had to have removed in January 2009. After countless late night tea and creamsicle runs, it was over. That surgery, and January 2009, marks the date when Kath’s real remission began, and she has been cancer free ever since.

Since 2006, Kath has worked tirelessly to help the Save Your Skin Foundation grow, and I am pleased to report that it is now an international organization. Along the way, Kath and Save Your Skin have helped so many families who are lost upon receiving their diagnosis. A look at the ‘Survivor Stories’ and ‘Memory of our Friends’ section of the SYS website demonstrates how much amazing work Kath and Save Your Skin has done. I have truly never seen someone so passionate about their work, which is even more impressive when this person should be exhausted.

I am so honoured to be involved in such an important organization, so proud of my aunt, and so endlessly thankful that she’s still here with us. Though I no longer want to travel to space, I’m very grateful that Kath and I are still able to drink hot chocolate on the back deck and look at the stars.”

Thank you again for your story Taylor!

The Save Your Skin Foundation is disappointed with the recent Record of Advice released by the Canadian Drug Expert Committee (CDEC) in regards to the innovative actinic keratosis (AK) treatment Picato (ingenol mebutate). We don’t feel the Record of Advice adequately addressed the important questions asked by the Common Drug Review (CDR) participating Drug Plans and didn’t take into account the benefits patients experience with this therapy.

The Save Your Skin Foundation is committed to principals that provide patients choice in their own treatment. Picato requires a 2 to 3 day dosing schedule as compared to older treatments that are dosed for up to 16 weeks, during which time significant serious skin reactions persist including burning, peeling, swelling and pain. A shorter dosing schedule greatly increases the likelihood of the treatment being completed by the patient.

AK is a common pre-cancerous skin condition that can lead to non-melanoma skin cancer. In fact, somewhere between 60 and 80 per cent of squamous cell carcinoma begin as actinic keratosis, and although AK lesions aren’t cancerous, people with AK are six times more likely to develop skin cancer than people without. This is why the effective treatment of AK is vital.

Based on the advance Picato represents for patients due to the significant improvement in treatment regimen and potential to increase patient adherence, the Save Your Skin Foundation commends the Provinces for initiating the Request for Advice. We now look to the Provinces and the manufacturer to ensure that patients have access to this important therapy.

The CDA will be holding free, public skin cancer screenings and other events throughout Sun Awareness Week.

The screenings will take place in cities and towns across the country. To find the screening clinic nearest you, check the list of confirmed dates and locations on our events page.

To hear about new dates and locations as they’re announced, follow us on Twitter or join us on Facebook.

Sun Awareness Week Video Competition for Teens
If you know any teens — either individuals or, even better, a group — who are interested in video, let them know about the CDA’s Sun Awareness Week Video Competition.

For a chance to win an iPad, all they have to do is:

• Make a video that shows how teens can protect their skin from the sun
• Submit and share it on our Facebook page by June 20

And all you have to do is spread the word. We’ve made it easy to get started with:

• A downloadable poster you can print and share
• A Facebook-based contest that’s easy to share

The CDA will announce the winners at the end June. The submitter of the best video will win an iPad. Runners-up will receive Apple gift cards.

Together, we can help teens get involved — and protect their skin this summer!

For complete rules and guidelines, as well as facts about the dangers of sun exposure, visit the CDA’s Facebookpage.

Complimentary copies of Best of JCO (Journal of Clinical Oncology) have been made available at the ASCOAnnual Meeting.

More specifically, we’d like to share a JCO article on melanoma and the survival, durable tumor Remission, and long-term safety in patients with advanced melanoma receiving Nivolumab.

ABSTRACT

Purpose
Programmed cell death 1 (PD-1) is an inhibitory receptor expressed by activated T cells that downmodulates effector functions and limits the generation of immune memory. PD-1 blockade can mediate tumor regression in a substantial proportion of patients with melanoma, but it is not known whether this is associated with extended survival or maintenance of response after treatment is discontinued.

Patients and Methods
Patients with advanced melanoma (N = 107) enrolled between 2008 and 2012 received intravenous nivolumab in an outpatient setting every 2 weeks for up to 96 weeks and were observed for overall survival, long-term safety, and response duration after treatment discontinuation.

Results
Median overall survival in nivolumab-treated patients (62% with two to five prior systemic therapies) was 16.8 months, and 1- and 2-year survival rates were 62% and 43%, respectively. Among 33 patients with objective tumor regressions (31%), the Kaplan-Meier estimated median response duration was 2 years.

Seventeen patients discontinued therapy for reasons other than disease progression, and 12 (71%) of 17 maintained responses off-therapy for at least 16 weeks (range, 16 to 56+ weeks). Objective response and toxicity rates were similar to those reported previously; in an extended analysis of all 306 patients treated on this trial (including those with other cancer types), exposure-adjusted toxicity rates were not cumulative.

Conclusion
Overall survival following nivolumab treatment in patients with advanced treatment–refractory melanoma compares favorably with that in literature studies of similar patient populations. Responses were durable and persisted after drug discontinuation. Long-term safety was acceptable. Ongoing randomized clinical trials will further assess the impact of nivolumab therapy on overall survival in patients with metastatic melanoma.

To link to abstract online and to download full article click here.