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Dr. Smylie Receives the CMC Legacy Award

Dr. Michael Smylie was the recipient of the 2023 Canadian Melanoma Conference Legacy Award which was presented on February 26, 2023. Kathy Barnard, Save Your Skin Foundation’s founder and former patient of Dr. Smylie, had the honour of saying a few words about this incredible doctor, friend, athlete and father. She read several testimonials from former patients and caregivers, including the following one from her very own sister, Rosemary Westie:

“To Mike,

When you love someone who’s diagnosed with cancer, the world as you know it comes to an end. When my big sister and best friend was diagnosed I was petrified. I couldn’t imagine a life without her in it, none of our family could. But sadly, as a family, you can only do so much. You can provide love, support, and hope, but at the end of the day, you’re still petrified, because love, support and hope can’t cure this relentless disease.

In the early years through the various treatments and surgeries my sister had, we always feared we were on borrowed time. Although she stayed strong and dealt with everything this disease threw at her, there came the day we dreaded, where we were told there was nothing they could do. The panic and fear that set in at that stage was indescribable, I simply could not breathe. But then, when we were at our most desperate, we were granted a miracle.  And that miracle was you, Mike Smylie.

I know now, years later, that you are simply a lovely and humble man. You’re a wonderful dad and a friend to many. You are a tremendous athlete, and a connoisseur of excellent rum. In fact, as far as I’m concerned, your only flaw is that you are an Edmonton Oilers fan🤣.

But can I tell you, Mike, that when we first met under such dire circumstances, to me, my sister and our entire family, you were this divine, all-powerful, god like, super being, that had my sisters life in your hands. I wonder if you realized that you controlled the fate of our family. Our future, our happiness, whether she would live or die.
I think about that now, and what a huge burden that was to place on your shoulders, and to think that you didn’t just carry that burden for her, but for every single one of your patients.
I hope we weren’t asking too much of you Mike, but we needed you, desperately. You brought calm to our panic, you brought hope when we felt hopeless. You helped us understand what was happening, and what to expect throughout the treatment, which was invaluable when we were in the eye of the storm.  You always made us feel like she was your only patient and your biggest priority, and we know you did the same for everyone single one of your patients. 🙂

You, my dear, just have to accept that you will always be our super hero. Not the one wearing the cape, but the one wearing the wings, and of course the tight bike shorts. 🤣Thank you Mike, for saving my sisters life.

Kath’s sister Rose”

Dr. Michael Smylie has been a good friend of the Foundation since its creation. He sits on our Medical Advisory Committee and has been a frequent presenter on our webinars, including our most recent Post-CMC 2023 Update webinar. Dr. Michael Smylie is a medical oncologist at the Cross Cancer Institute, and professor at the Department of Oncology at the University of Alberta in Edmonton.

Congratulations Dr. Smylie!

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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 After Party

Join the funnest part of MOVE FOR MELANOMA this year by joining our VIRTUAL AFTER PARTY! Celebrate with the Save Your Skin team, donors and fellow participants! Everyone is welcome!

The After Party will take place on Sunday, September 26th, 2021 at 5pm PT | 8pm ET on a platform called Topia. If you attended our virtual Giving Hope Gala in the spring, then you will know that Topia is a fun, new, online chat platform that allows us to connect virtually in a more human way. You’ll easily be able to move in and out of conversations with other attendees like you would in person with the platform’s spatial video, while also exploring a world full of surprises.

In the meantime, click here to share, participate in, and stay up to date on the progress of our 3rd annual Move for Melanoma event!

 

 

 

 

 

 

 

 

 

What you’ll need:

  • A computer or a tablet – You’ll need a Windows or Mac desktop or laptop computer equipped with a camera, or a Android Tablet or Ipad. For the best experience on Android tablets please use “desktop mode” in Chrome. 
  • A supported web browser – Topia works best on Google Chrome, Edge, and Brave on desktop and laptop computers. For best results we recommend using one of these three browsers.
  • Headphones – There is ambient sound in Topia which is personal to you. Headphones ensure a great experience. Without headphones, higher volume can result in feedback for other guests or mixed sounds which isn’t fun for anyone.

 

How to join:

  • On September 26th at 5pm PT | 8pm ET, click on this link to join: https://topia.io/save-your-skin-foundation. Don’t bother trying to go on beforehand as it will not be available.
  • When you first go in, you will be asked to choose a display name.
  • Your browser will ask for permission to use your camera and audio. If you have Zoom/Teams/Skype open you won’t be able to do this, so please make sure they’re closed first.

 

What to do once you’re in:

  • You can move around the space using either mouse clicks or your arrow cursor buttons.
  • You hear and see people better the closer you are to their little “Topi,” or person.
  • If you walk away from people you hear and see them less. People “fade out” as they get farther away.
  • As you explore, notice when your cursor turns into a pointer. This indicates that the object your mouse is on has a function. Click to interact with the object. 
  • You can mute yourself or others by clicking the speaker icon in the top right corner of your video or theirs. When muted the speaker will turn from black to red.
  • To send a private message to someone at the gala, click on the envelope symbol on their video. If someone sends you a private message, the envelope symbol to the left of your screen will become red. 

 

For complete instructions on how to use Topia and join the party, click here!

 

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Laurence’s Story

Vancouver, BC

It was around 1pm and my partner and I were playing with monkeys on a beach in Thailand. That’s the moment my life changed forever.

Out of nowhere, as if someone had just pulled a curtain down over my right eye, this “black line” fell about a quarter of the way down over top of my vision. It was super strange and I immediately asked my partner if there was something she could see in there, but she said no. Apparently it looked fine. I had an instant thought that, maybe because we had been doing a lot of scuba diving this trip, perhaps a blood vessel or muscle became damaged due to the pressure under water.

A week later, once finally arriving back home, and this black line still very present, I went to a walk-in clinic. And from that first doctor’s visit, it took another 6 or 7 days and 4 more doctor’s appointments before I finally heard the end result. That’s also when I heard the scariest 3 words ever said to me in my life: You Have Cancer.  Ocular Melanoma.

Since I can remember, I’ve always had such an appreciation for the pure natural beauty that this world is, and what it means to be able to reflect on that miracle alone. To be able to see one’s place in this universe, on this planet, in this life… to simply be aware of what it is to be alive.

I could never get enough of it!

Growing up on Vancouver Island surrounded by endless natural beauty, and having the freedom to grow and learn in that space, was a priceless experience in shaping this view and appreciation I had developed early on. It inspired me as an artist, a musician, and kept me curious about expanding my world infinitely. It gave me the inspiration to pursue those dreams and passions and to let Experiences be my guide. When I graduated from high school, I moved to Vancouver with my band to become rock stars and follow the path of the arts.

Since that move 18 years ago, I have witnessed and experienced my dreams manifest and become reality so many times over, in so many different ways.

It was the reason I met the love of my life.

It was also the reason I found martial arts.

Bujinkan Budo Taijutsu, to be precise. The art of the Ninja. It’s an ancient Japanese art, comprised of 9 different martial art schools of the past and refined into one discipline. This art has been studied and passed down through centuries and, through the time of feudal Japan, the Ninja became known as assassins used to take out leaders of war to alter or prevent battles from ever taking place. But once I began to study the true art as passed down through the ages, and separated myself from what I thought I knew from TV and movies, a whole new appreciation and way of experiencing the world was opened to me.

Ninja were in reality farmers, peasants, and simple people not wanting to live under the harsh rule demanded of the time. Their outlook on life was that of Peace, Love, and Compassion for all things. For Life. But, as well, they had a very different view to fighting and conflict.

What mattered was Life and Death, not Winning and Losing. Fighting to win serves only the ego. Fighting to survive something that is intent on taking your life, is necessity. Whatever it takes to wake up in your own bed, or to protect those that are worth your own life, are the only reasons to engage in conflict or battle. Fighting, or preventing a fight to literally survive, is the only reason to ever engage.

I’ve studied this concept for 16+ years, traveled multiple times to Japan to study with my sensei and the Grand Master of the art. I’ve passed the one and only test given in the art, which is for the 5th degree black belt.

The test goes like this: you kneel on the floor in seiza (feet crossed under your butt, back straight, hands on your thighs, relaxed). The Grand Master stands behind you, holding a sword, and whenever he feels ready (meaning 1 second or 10 minutes, any length of time he wants), he will project at you for a split second the most intense feeling of “Death”, and then proceed to strike straight down on top of your head with the sword. Your test is to sense this intense feeling of “Death”, and to roll out of the way avoiding the sword. That is it. You need to know when your life is truly in danger, and then make the right decision. In modern times, a Boken (wooden katana) is used for this test, but originally, it was done using a real katana. Failure to survive was not an option. And yes, I passed my test the first time 😉!

So what do I do now? There is a very clear opponent trying to kill me, its intention is very clear. And I can’t roll out of the way. No matter which way I seem to move, I can’t escape. And I can’t even see my foe to face it eye to eye. In the past 3.5 years fighting, I’ve had 2 major surgeries, 3 separate rounds of radiation, changed my diet and tried immunotherapy, but nothing has worked thus far. Ocular melanoma, once inside the body, is very rare and can be extremely difficult to treat.

But just this April 2021, my life was changed again! I was introduced to Kathy Barnard of Save Your Skin Foundation. I was made aware of the foundation through my doctors at BC Cancer, who said it couldn’t hurt to give her a call.

It was one of the most important phone calls I’ve ever had the pleasure to make. A brand new treatment for ocular melanoma had just become available this year, but was going to require travel once a week from Vancouver to Edmonton. And not just once but for 12 treatments.

That would mean 12 plane tickets, 12 hotel nights, taxi’s to and from the hospital and airports… and unfortunately, I was responsible for all the expenses related to getting to my appointments. That is until I spoke to Kathy.

Save Your Skin Foundation has become my “secret weapon”. Now I have the ability and support to be able to fight back. Not to win this fight, but to ultimately have the best chance to survive.

Kathleen Barnard is a cancer survivor from 2003. In fact she’s a miracle. Not only for having beaten her cancer, but for creating this amazing foundation for people suffering from all forms of melanoma. She and her foundation have been taking care of All of the expenses I mentioned in order to get me where I need to be, and to eliminate the extra stress and pressure from the financial burden this would put on anyone.

It’s one of those scenarios you find yourself giving yourself a pinch every once in a while, just to make sure it’s not a dream. Well, I can tell you from the bottom of my heart that it’s no dream. Just a dream turned into reality!

To everyone at Save Your Skin Foundation, to all the donators and supporters, to anyone helping in the fight against All cancers, I thank you!

 

 

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#InItTogether Campaign – Melanoma Is Personal

We’ve teamed up with Hayley Wickenheiser again this year to bring awareness to those coping with a melanoma diagnosis.  Summer is here, but if you’re not protecting yourself from the sun, the damage can be far-reaching. Melanoma is one of the top 10 cancers diagnosed in Canada and getting a diagnosis can be scary. Arming yourself with the right information you can literally change the course of your melanoma experience.

Ask about your mutation type. Do your research to find out your options. And know you are not alone in this.

Some Patients, Survivors, and Caregivers from the Save Your Skin Foundation family have come together share their story to inspire education and hope.

“I am newly diagnosed with metastatic malignant melanoma, and I plan to survive it.” – SHERI

“My melanoma came back, but I’m not letting fear in.” – BOB

“I was in end-of-life care when my doctor recommended I take part in a clinical trial.” – MIKE

“Learning that my melanoma was BRAF+ was a huge weight off my shoulders. That knowledge shaped my path through the disease.” – COLIN

“Melanoma research literally saved my life. Today I’m surrounded with the support of the melanoma community and I know they have my back.” – NATALIE

Check out this article in Elle magazine, dedicated to Canadians who have their own personal melanoma stories: 

ELLE Canada – Summer is Back ~ Do you know what you need to know about melanoma?

Check out these “Melanoma is Personal” videos on YouTube   And click here to see more clips on the SYSF youTube channel

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SYSF Around the World

“SYSF works hard to bring resources from around the world to give Canadian skin cancer patients the latest information on treatment options and disease management.

This year our May campaigns have gone around the globe – from our long-standing participation in the Global Coalition for Melanoma Patient Advocacy with the Melanoma Research Foundation to the Melanoma International Patient Advocates Coalition with AIM at Melanoma to Ocumel Canada’s partnership with the US, the UK, Ireland and Australia, all the way home to the NCCN Guidelines created in the US but used by our own Health Care Providers in Canada.

We hope you enjoy these resources and welcome questions or feedback any time.”

Natalie Richardson, Managing Director, SYSF

We are very pleased to congratulate the National Comprehensive Cancer Network on the release of a new valuable patient/caregiver resource! Save Your Skin Foundation is proud to have provided endorsement for the Guide and have our Managing Director Natalie featured on the cover!

The new NCCN Guidelines for Patients® on Melanoma provides an extremely comprehensive and informational reference for patients covering melanoma basics, testing, staging, treatment and recurrence. 

Click HERE to view and download the Guidelines

 

In collaboration with the Global Coalition for Melanoma Patient Advocacy, hosted by the Melanoma Research Foundation in the United States, Save Your Skin Foundation participated in the making of this skin check awareness video for Melanoma Awareness Month 2021, featuring melanoma patients and caregivers from across the globe demonstrating that the time it takes to do a skin self-exam is the same as that of drinking a cup of coffee. Check it out:

Need help performing a self skin check? Click here for a video tutorial!

 

Also:

Save Your Skin Foundation is a proud member of MI-PAC, a coalition of organizations across the globe committed to reducing the global melanoma burden through education, advocacy, and collaboration. MIPAC, hosted by AIM at Melanoma in the United States, works to increase awareness and change public perceptions of melanoma, empower melanoma patients to take an active role in their care, and effect change in regulatory policies to optimize treatment and care.

Watch for our upcoming patient stories and continued awareness initiatives right here at home in Canada!  For more information or support please contact us at kathy@saveyourskin.ca / 1.800.460.5832

 

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Metastatic Melanoma on Canadian Health & Family – with Dr. Marla Shapiro

Watch this video which aired May 10, 2021:

Melanomas on the skin usually start as areas of pigmentation that’s changed or irregular. If they are noticed and picked up early, they can often be removed. But in some cases it turns into something much greater.

In this segment, we will hear from Dr. Marcus Butler from Princess Margaret Cancer Centre, Kathy Barnard from Save Your Skin, and Shannon, who has been living with metastatic melanoma since 2005. They will be telling their stories, and sharing support options for those seeking education on metastatic melanoma.

 

For more information please visit Health and Family Metastatic Melanoma – Health and Family

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