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A Viking’s Challenge 2023 Recap

A Viking’s Challenge 4th Edition was March 4 & 5 and we couldn’t be happier with how the event unfolded.

In total, 36 people participated, running a combined total of 737 km, or the equivalent of 24.5 crossings of Lake Winnipeg. For the first time since the pandemic, Chris was able to be back on the lake with his friend Shawn in Gimli, MB this year, despite the ongoing treatments and side-effects that come with fighting a dangerous cancer.

We thank everyone who contributed to A Viking’s Challenge 2023. Your actions have made a powerful statement of support for Chris and fellow melanoma patients across CanadaTogether, we raise nearly $9,000 this year. Since its inception in 2020, the event has raised $50,000 to help assist patients reach the life- treatment they need.


The Weekend in Pictures

From top left: Chris Isfeld, Shawn Bjornsson and friends, Lisa Boldt, Rosemary Westie and friends, Joan Denroche, Rosemary Westie and family, Chris Isfeld, Shawn Bjornsson and friends, Jessica Drakul.

Thank You to our Sponsors!

Many thanks to the businesses who generously sponsored “A Viking’s Challenge” this year:

  • Bristol Myers Squibb
  • Ship and Plough Tavern
  • Pfizer
  • Merck Canada
  • Sanofi

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Skin of Colour: Skin Cancer Image Sources

There is a distinct lack of racial diversity in medical images of skin conditions.

To address this gap, we have been working with a medical student to help collate resources that depict skin cancer, and other skin conditions, in people of colour.

We are very pleased to finally have the resource complete and ready to share with you. Click the button or click on the image below to expand.

Prepared By: Rebecca Lena MD (C)

University of Toronto Faculty of Medicine

Version: 01/03/23

The following citation is recommended: Lena, Rebecca. Skin of Colour Skin Cancer Image Sources. Save Your Skin Foundation. January 2023, https://saveyourskin.ca/wp-content/uploads/Skin-of-Color-Skin-Cancer-Image-Sources.pdf. [Day Month Year of access].

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Webinar – Post-CMC 2023 Update from Dr. Smylie

Date/Time:  March 1 – 5pm-6:30 pm PT / 8pm-9:30 pm ET

Presented by Dr. Michael Smylie, Cross Cancer Institute, Edmonton, this webinar will review breaking news, key takeaways, clinical data and other updates presented at the Canadian Melanoma Conference (CMC) taking place in Banff, Alberta, from February 23-25, 2023. Dr. Smylie will present on key clinical trial data from 2022 in the management of melanoma, the latest strategies in melanoma as they pertain to medical oncology, pathology, radiation and surgery, and implementation approaches that maximize patient standard of care in melanoma. Dr. Michael Smylie is a medical oncologist at the Cross Cancer Institute, and a professor at the Department of Oncology at the University of Alberta in Edmonton

View Webinar Recording (English) Here

Presenters:

  • Kathy Barnard, President, SYSF, melanoma stage 4 survivor
  • Dr. Michael Smylie, Medical Oncologist, Cross Cancer Institute, Professor, Department of Oncology, University of Alberta, Edmonton

More on CMC

This conference brings together medical oncologists, surgeons, dermatologists, radiotherapists, pathologists, molecular biologists, immunologists, and other allied health professionals interested in the treatment of melanoma worldwide.

  1. Describe key clinical trial data from 2022 in the management of melanoma and understand the impact on Canadian practices.
  2. Understand the latest strategies in melanoma as they pertain to medical oncology, pathology, radiation, and surgery.
  3. Implement approaches that maximize patient standard of care in melanoma.
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Patient Reported Experience Measures: 2022 Highlights!

In 2022, Save Your Skin Foundation ran three major patient surveys in order to collect patient-reported experience measure data (PREMs): 

  • “The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma” (April/May)
  •  “The Patient Experience: Treatment of Patients with Ocular Melanoma” (April/May)
  • “Patient Survey: Treatment Plan Decision-Making” (September/October)

Long-form reporting of the data for “The Patient Experience: Treatment of Patients with Ocular Melanoma” and “Patient Survey: Treatment Plan Decision-Making” are available on the Save Your Skin website. “Treatment Plan Decision-Making” was available in both English and French, and was developed in partnership with AIM at Melanoma. The following blog highlights some particularly notable outcomes from these surveys; we hope you find something of interest to you!

 

Highlights from “The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma”
  • When asked if they would consider it reasonable to receive additional treatments should their melanoma recur at a later stage, 78.26% directly indicated that they would be interested in additional treatments (Q12).
  • When asked specifically about their experiences on Pembrolizumab (Keytruda™), 73.68% reported enduring fatigue as a side effect, followed in frequency of votes by skin rashes (36.84%) and cognitive impairment (26.32%) (Q17). 61.11% found these side effects manageable (Q18).
  • 95.45% of participants indicated that the side effects resulting from this therapy were worth it for the benefits of the treatment (Q19).
  • When asked if they would consider receiving drug therapy from a clinical trial, 77.27% responded that they would, should the need arise. Of the 22.73% that responded “not sure,” several added comments indicating that they would consider it, but would need more information (Q22).

 

Highlights from “The Patient Experience: Treatment of Patients with Ocular Melanoma”
  • 63.63% of our ocular melanoma survey participant pool who have not received genetic testing would like to, suggesting that many patients see this as a worthwhile process (Question 11).
  • Unsurprisingly, eye-related side effects are the most common for patients with ocular melanoma. These include loss of vision (64.51% of responses), eye pain (16.12%), cataracts (9.67%), flashes of light in the eyes (12.9%), dry eyes (3.22%), macular edema (3.22%), and retinopathy (3.22%) (Q16).
  • 82.35% of participants have ongoing follow up appointments/testing every 3-6 months (Q20).
  • 79.31% of responses suggested that if their disease were to progress in the future, they would be interested in receiving additional treatments (Q21).
  • 64.71% of survey participants indicated that if they were offered enrolment in a clinical trial, they would take it (Q24).
  • The most frequently cited side effects by participants receiving KIMMTRAK ® (tebentafusp-tebn) for their ocular melanoma were fatigue and skin rashes (both selected by 50% of participants) (Q28).
  • 100% of patients who received KIMMTRAK ® (tebentafusp-tebn) noted that the side effects of this treatment were worth enduring for the survival benefit (Q30)
  • The most frequently cited barrier to accessing KIMMTRAK ® (tebentafusp-tebn) was having to travel to another city, which was both an inconvenience and a financial hardship (Q31).

 

Highlights from “Patient Survey: Treatment Plan Decision-Making” English language survey
  • When asked what was the most important topic to discuss with their healthcare team at the time of diagnosis out of the following options: “care plan,” “prognosis,” “treatment timeline,” “quality of life,” and “financial considerations,” survey participants selected “prognosis” as their primary concern, followed by “treatment timeline” and then “care plan.” That “quality of life” and “financial considerations” are the lowest priorities suggests that patients care about survival above all else (Q7).
  • Questions nine and ten demonstrated that patients are creating a treatment plan with their healthcare team along their ideal timeline, which is either at the time of diagnosis or between their first and third appointments.
  • The majority of survey participants (76.56%) stated that they understood at least “most” of the cancer-related information provided to them (Q12); however, 32.82% expressed dissatisfaction with the amount and quality of the information they received (Q21).
  • When asked what resource they most frequently turn to for cancer-related information (other than their healthcare team), the internet was cited by 82.54% of participants (Q13)
  • Questions 15 and 16 illustrated that 73.44% of participants feel they had an appropriate amount of input in developing their treatment plan. 
  • When asked to prioritise the following factors when developing a care plan: “dosing schedule/logistics,” “long-term survival,” “risk of adverse events/side effects,” “financial concerns,” and “lifestyle and family implications,” patients ranked “long-term survival” as their highest priority (Q17).
  • When asked to indicate the two most significant challenges they experienced during treatment, the need for emotional support (60.94%) and the impact of physiological symptoms (45.31%) had the highest number of votes (Q27).

 

Highlights from “Patient Survey: Treatment Plan Decision-Making” French language survey
  • When asked what was the most important topic to discuss with their healthcare team at the time of diagnosis out of the following options: “care plan,” “prognosis,” “treatment timeline,” “quality of life,” and “financial considerations,” survey participants selected “care plan” as their primary concern, followed by “prognosis” and then “quality of life” (Q7).
  • Like the English language cohort, the French language survey participants received care plans along their ideal timeline of either at the time of diagnosis or between the first and third appointments (Q9, 10).
  • In the French language survey, a greater percentage of participants indicated having more responsibility for the development of their care plans. Only 27.27% felt “appropriately involved,” while 63.63% indicated that they made the decision more independently (Q15).
  • When asked to prioritise the following factors when developing a care plan: “dosing schedule/logistics,” “long-term survival,” “risk of adverse events/side effects,” “financial concerns,” and “lifestyle and family implications,” the French language patients also ranked “long-term survival” as their highest priority (Q17).
  • When asked whether they felt prepared for treatment, participants had polarised responses; 63.64% reported feeling “entirely prepared for treatment,” while 27.27% were “mostly unprepared for treatment” (Q24).
  • When asked to indicate the two most significant challenges they experienced during treatment, the French language survey participants voted most frequently for physiological symptoms (54.55%), followed by emotional support and a lack of information, which were tied for votes (36.36% each). This suggests that the need for emotional support is more satisfied for the French language survey participants (Q27).

 

The data from patient reported experience measures, sampled above, is instrumental to our operations as a patient group. We consider these reports when we are prioritising our initiatives for the new year, preparing our strategic plans for patient support, education, awareness, health policy, and advocacy, and share them with other stakeholders in the cancer space. We hope this information was valuable to you, and that the new year brings you joy, prosperity, and good health.

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Hockey Fights Cancer Focuses on Save Your Skin Foundation This Year

Save Your Skin Foundation has been chosen to receive special focus during the Vancouver Canucks’s Hockey Fights Cancer Night!

 

This year’s Hockey Fights Cancer game will have a special focus and holds important meaning to a member of the Canucks family. In 2020, Natalie Miller’s mother, Janet, passed away from metastatic melanoma. Since her diagnosis, J.T. and Natalie have supported Save Your Skin Foundation. The Vancouver Canucks announced this morning that a $20,000 donation will be made to Save Your Skin Foundation on behalf of the Canucks for Kids Fund.

 

If you’d like to join us on Sat, Dec. 3rd at Rogers Arena, you can purchase your tickets using the following link and SYSF will get $10 from every ticket sold: https://offer.fevo.com/arizona-coyotes-ebylfkn-46c643. We will have a booth in section 111 so if you come to the game, make sure to come say hi! A video featuring SYSF founder Kathy Barnard will play during the game and our booth will be features as well.

 

On top of all this, the purple jerseys worn by the players during their warm-up session will be auctioned off with proceeds coming to SYSF. We are truly honoured by the generosity shown by the Vancouver Canucks and the J.T. Miller family, and by this wonderful opportunity to bring greater awareness to melanoma.

 

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Webinar – Living with Cancer: Survivorship & Mental Wellness

Date/Time:  November 23, 2022 – 5pm-6:30 pm PT / 8pm-9:30 pm ET

This webinar will focus on the experience of cancer survivors and the importance of mental wellness from the perspective of four women with unique backgrounds and experiences in the cancer space. Shannon Gaudette, a melanoma stage 4 survivor, will talk about her physical and emotional wellbeing throughout her cancer experience. She will be followed by Antonella Scali, Executive Director of the Canadian Psoriasis Network and the daughter of a cancer survivor, who will talk about the results of a survey completed by All.Can Canada and implications for mental health and the need for psychosocial supports. Then, Kathy Barnard, president of the Save Your Skin Foundation and a melanoma stage 4 survivor, will talk about her experience as a long-time survivor. Finally, Lyanne Westie, SYSF wellness support consultant, will present on the importance of mental wellness in all aspects of life. These short presentations will be followed by a discussion between the four presenters, with time for questions from webinar attendees.

Watch the recording here

Presenters:

  • Kathy Barnard, President, SYSF, melanoma stage 4 survivor
  • Antonella Scali, MSW RSW, Executive Director, Canadian Psoriasis Network
  • Shannon Gaudette, melanoma stage 4 survivor
  • Lyanne Westie, SYSF wellness support consultant
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Move for Melanoma 2022 – It’s a Wrap

A tremendous THANK YOU to all of our incredibly dedicated participants and generous donors!

74 participants and 20 teams across Canada took part in Move for Melanoma this year! We have been so moved and inspired by this incredible community of patients, families, and friends.

After the success of last year, we once again set ourselves an ambitious goal of raising $75,000. With your help, we ended up surpassing our goal once again this year!


To wrap up this monumental weekend, we’ve created the Recap Video below. We hope you will take a few moments to watch it as we pay tribute to our incredible participants, donors and sponsors across Canada.


We’d also like to highlight the three fundraising teams that raised the most this year.

Team Ocumel Canada

Based in Victoria, BC, Team Captain Nigel Deacon ran a marathon distance to inspire others to donate to this worthy cause. Together with his fellow team members Martin Dawes and Linda Sendall, they raised an incredible $11,760 for ocular melanoma patients.

Check out his team page here.

 


Team Ani’s Keepers

Based in Chilliwack, BC, Ani Davidson and her sisters challenged themselves to complete a combined 10,000 minutes of fitness between them in the month of September – and they crushed that goal, completing 11,820 minutes! Ani is currently undergoing treatment for melanoma.

Check out her team page here.


Team Mela-No-More – In Honour of Laura

Based in Vancouver, BC, Team Mela-No-More raised funds in honour of Laura, whom they lost after a long and courageous fight. Laura was a beautiful and strong woman, wife and mother. The team raised almost $5,370

Check out their team page here.


Finally, we’d like to acknowledge the many businesses that stepped up to support our event this year. Please show them your support!

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2022 Sunscreen Dispenser Pilot

OUR 2022 SUNSCREEN DISPENSER PILOT HAS BEEN LAUNCHED!

Save Your Skin Foundation partnered with medical student siblings Samuel and Karen Farag, and the municipalities of Summerside, PEI, Riverview, NBNew Westminster, BC, and Brooks, AB – as well as BC Cancer – to launch 10 dispensers in early August 2022.

The dispensers are automatic and touchless, and provide free, Health Canada approved SPF 30 sunscreen for anyone who needs it. The sunscreen is zinc oxide based, free from chemical sunscreen filters, common allergens and toxic ingredients including oxybenzone, avobenzone, retinyl palminate, PEG, parfume, and sodium lauryl sulphate. See image below for more details.

Here are the locations of the dispensers as of August, 2022:

New Westminster, BC

  • Moody Outdoor Pool
  • Hume Outdoor Pool
  • Grimston Park Wading Pool
  • City Parks Works Yard to support City staff working in the outdoors

Summerside, PEI

  • Summerside Turf Field
  • Leger Park
  • Summerside Boardwalk
  • One mobile dispenser to be used for festivals and public events

Riverview, NB

  • Behind the gazebo on the Riverfront Trail

Brooks, AB

  • Duke of Sutherland Park and Splash Pad

Applying sunscreen is part of an overall sun-safe way to enjoy the outdoors. First, limit your time in the direct sunlight, especially between 11 a.m. and 3 p.m., seek shade, cover up by wearing long sleeves and pants and a wide-brimmed hat. Use sunscreen, specifically one labelled broad-spectrum, SPF 30, protect the lips with lip sunscreen or zinc oxide. Apply 20 minutes before sun exposure, and reapply every two hours or after swimming.

Affixed to the Dispensers is a list of the sunscreen ingredients and reference to Health Canada’s approval of the sunscreen, as well as a disclaimer with respect to the use of the Dispenser or the sunscreen contained therein:

THE SUNSCREEN IS BEING USED AT YOUR OWN RISK. None of Save Your Skin Foundation, (participating cities), nor anyone else connected to these organizations, makes any assurances, representations, guarantees or warranties with respect to the use or effectiveness of the sunscreen or dispenser, and any and all use of the sunscreen or dispenser is done at your own risk. By using the sunscreen or the dispenser, you acknowledge and agree that none of Save Your Skin Foundation, (participating cities and organizations to be listed) nor anyone else connected to these organizations are responsible for the results or consequences from any use of the sunscreen or dispenser.

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Move for Melanoma 2022

Move for Melanoma is an activity challenge that takes place across Canada. The goal of the event is to bring awareness to melanoma, non-melanoma skin cancer and ocular melanoma, while raising funds to support patients affected with these diseases when they need it most.

This year, the event will take place on September 23-25th, 2022. As always, participants will be able to choose a physical challenge of their choice to complete on the weekend of the event. Participants will form teams and, together with their friends and family, try to reach their personal fundraising goals.

To facilitate the whole thing, again this year, we will be using a custom website that allows people to register, donate, solicit donations, track progress and promote the event all in one place. The website also includes many resources for participants to help them get ready, and a Q&A page for more information.

If you’re interested in joining us, please visit Move for Melanoma 2022 and register now.

 

Save Your Skin Foundation is the only organization in Canada that supports skin cancer patients financially when they need it most. All the money raised through your donations goes directly to patients in the form of cab fares, treatment costs, flights, accommodation and other necessary but costly expenses incurred while receiving treatment.

Whether you’re a survivor who wants to bring hope to newly diagnosed patients, the family member or friend of a patient who wants to send a powerful message of solidarity, or a patient who wants to help change the face of cancer for ever, we invite you to take a stand against melanoma and to move with us this September!

Hand in hand, we fight melanoma together!

          

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Introducing Sty-Lives (Styling Hair and Saving Lives)

We are very pleased to be launching the Sty-Lives (Styling Hair & Saving Lives) program aimed at increasing early detection of skin cancer

The Sty-Lives program is being led by Dr. Miranda Waugh, first year Dermatology resident at the University of Ottawa, and Shannon D’Angelo, medical student at the Northern Ontario School of Medicine, with the support of Save Your Skin Foundation, and leading Dermatologists across Canada.

Through the Sty-Lives program and video, participating salons and barbershops are provided with training materials and resources, and are taught how to detect suspicious spots.

The purpose of the project is to help facilitate communication between the client and their healthcare provider, leading to earlier detection of potentially dangerous skin cancers. The goal is to help with detection, not with diagnosis. Click here to read the full press release

Help us spread the word!

All hair professionals in Canada are eligible to participate. The next time you get your hair cut, tell your hairstylist or barber about this project and invite them to visit www.saveyourskin.ca/sty-lives to learn more and to register.

Watch the video here:

 

 

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