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patient stories

Ocumel Canada News!

The Ocumel Canada team has been very busy working on initiatives and strategies to help bring awareness to Ocular Melanoma (OM) and improve care pathways for patients across Canada.  In the spring we conducted a patient/caregiver survey with the intent to gather current information about primary and metastatic OM patient experiences across the country, from diagnosis and genetic testing options, to varying methods of treatment.

We deeply appreciate respondents’ time in filling out this survey, and we have now released a comprehensive report detailing their feedback.

Please click here to view the full report.  This data helps inform our work, and we share it with the treating physicians who handle our cases every day.  We work with treaters and treatment providers to create an ongoing and open dialogue which we believe will serve patients and their families in the most positive way.  We welcome any questions or feedback – please email ocumelcanada@saveyourskin.ca to get in touch!

And in other Ocumel Canada news…

 

We have expanded our participation in the annual SYSF event called “Move for Melanoma” – an activity challenge across Canada to raise funds for melanoma, non-melanoma skin cancer and ocular melanoma patients.  For the last two years OM patients and supporters have created their own teams on the Move for Melanoma platform, and they are welcome to do so again this year! But for those who may be just meeting us for the first time, or who might simply like to support Ocumel Canada with a donation, we have created Team Ocumel Canadaclick here to check it out.

Save Your Skin Foundation is the only organization in Canada that supports skin cancer and ocular melanoma patients financially when they need it most. All the money raised through 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.

To join the movement, our friend Laurence has shared his story and is a spokesperson and feature patient for this event.  Laurence has been fighting a battle with Ocular Melanoma for almost four years. Thanks to our Move For Melanoma fundraisers and donors, Save Your Skin Foundation can continue helping Laurence travel to receive a promising new treatment. Read Laurence’s story HERE.

Download these posters for print, and be ready to  register for Move for Melanoma 2021!

 

 

Please note – these resources are all available in French – email us at marianne@saveyourskin.ca for French.

 

ALSO!  Check out our new Ocumel Canada merchandise

Get your shirt today to help support Team Ocumel Canada and the work we do, supporting OM patients across Canada:

           

 

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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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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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Register Now for A Vikings’ Challenge

A Viking’s Challenge is Back!

Last March, Chris Isfeld completed a massive challenge, a challenge no one ever thought he’d be able to complete only a couple of years before. Three years after being diagnosed with late stage melanoma and becoming partially paralyzed from the waist down, he ran 30km across frozen Lake Winnipeg and raised almost $20,000 for melanoma patients.

Building on last year’s enormous success, Chris invites you to join A Viking’s Challenge this year by running a distance of your choice anywhere in Canada. By channeling our inner Vikings, we will make a powerful statement of support for Chris’s heroic journey and help support other melanoma patients so they can, one day, be victors themselves.

To learn more about Chris’s story and last year’s challenge, click here.

Register

 

Event Details

When: March 6-7, 2021 – all day
Where: Because of the pandemic, the event will take place virtually, allowing participants to run any distance they choose from any location in Canada and beyond.
How: To participate, you must first register here and pledge to run a certain number of kilometres. We will keep a running tally of the number of kilometres pledged and see how many times we can “cross” Lake Winnipeg.
Each participant will have the option to get a free medal to commemorate their participation. Special t-shirts and other merchandise are also available for purchase in our Etsy store!

How many times will we cross the lake this year?

As of this writing, 13 participants have already pledged to run a total of 205km (last updated on Jan. 18). What will you pledge to run?
As always, every dollar raised through this event will go directly to assisting melanoma, non melanoma skin cancer and ocular melanoma patients meet their everyday needs during treatment in the form of transportation, accommodation, child care, lost wages and more.
So what are you waiting for? Register now for A Viking’s Challenge and start training to channel your inner Viking!

 

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A Viking’s Challenge is Back!

A Viking's Challenge is BackMark your calendars! The second edition of A Viking’s Challenge will be taking place on March 6, 2021. 

Last March, Chris Isfeld ran 30km across frozen Lake Winnipeg and raised almost $20,000 for melanoma patients! Building on last year’s enormous success, Chris invites you to join A Viking’s Challenge this year by running a distance of your choice anywhere in Canada.

Chris’s Story

Chris is a melanoma survivor. His story with cancer began in 2017 when he was diagnosed with advanced melanoma. He was given lifesaving immunotherapy treatment just in time. The treatment was challenging but it proved to be effective. The cancer stopped growing and the side effects became more manageable over the next few months. Soon, he was walking again. By December 2018, just one year after his melanoma diagnosis, he was lacing up his running shoes again.

The results of his latest PET/CT scan, on November 2, 2019, show an almost complete metabolic response; he is well on the way to becoming NED (No Evidence of Disease).

 

A Viking's Challenge is BackTHE CHALLENGE

Chris had been frequently running and practicing yoga to overcome the physical and emotional anguish he was feeling.

In an interview with Global News, he said:

“A friend of mine, Shawn Bjornsson from Winnipeg, posted a photo after he did a 5K run in -40, and for some reason, I just made a comment and said, ‘Hey, I’ll race you across the lake,’ just as a joke, But a week later, I thought about it, and thought, ‘You know what, this is an absolutely great idea.’

“It gives me something to focus on, and obviously with my diagnosis, I had gotten to know the people at Save Your Skin Foundation very well, and decided that I should do it as a fundraiser and raise money for them.”

THE RACE

True to their Viking roots, they didn’t back down from a challenge. On March 7, 2020, they ran about 30 km from Grand Beach, Manitoba to Gimli, Manitoba, raising almost $20,000 for Save Your Skin Foundation. Read more about last year’s race here.

This Year’s Challenge

Last year’s race was a personal challenge for Chris and his friend Shawn, but since so many expressed an interest in joining the challenge in future years, Chris has decided to open the challenge up to the general public this year. Because of the pandemic, the event will take place virtually, allowing participants to run any distance they choose from any location in Canada and beyond. To participate, runners will have to register and make a one-time donation to Save Your Skin Foundation. More details will be coming soon but, in the mean time, lace up those running shoes, put on your helmet and start channeling your inner Viking!

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A Viking’s Challenge – March 2020

Melanoma patient Chris Isfeld is preparing for a 30 km race in subzero temperatures across frozen Lake Winnipeg. He’ll be racing his childhood friend Shawn Bjornsson to raise funds for Save Your Skin Foundation.

The event, which he’s calling A Vikings Challenge, will take place on March 7, 2020.

His Story

Chris Isfeld’s story with cancer starts in 2017. After dealing with back pain for a number of months, he felt sudden excruciating pain in his side. An ultrasound revealed lesions on his liver and large masses on his adrenals. A biopsy of the lesions confirmed  evidence of Melanoma. His scans revealed that the disease was very advanced and the tumor burden was severe.

Very quickly, the pain intensified. Chris had to go to the ER only a month after the biopsy. It was there he realized that he was partially paralyzed from the waist down. The doctors thought that his journey was coming to an end.

Chris was given lifesaving immunotherapy treatment just in time. The treatment was challenging but it proved to be effective. The cancer stopped growing and the side effects became more manageable over the next few months. Soon, he was walking again. By December 2018, just one year after his melanoma diagnosis, he was lacing up his running shoes again. 

The results of his latest PET/CT scan, on November 2, 2019, show an almost complete metabolic response; he is well on the way to becoming NED (No Evidence of Disease).

The Challenge

Chris had been frequently running and practicing yoga to overcome the physical and emotional anguish he was feeling.

In a recent interview with Global News, he said:

“A friend of mine, Shawn Bjornsson from Winnipeg, posted a photo after he did a 5K run in -40, and for some reason, I just made a comment and said, ‘Hey, I’ll race you across the lake,’ just as a joke, But a week later, I thought about it, and thought, ‘You know what, this is an absolutely great idea.’

“It gives me something to focus on, and obviously with my diagnosis, I had gotten to know the people at Save Your Skin Foundation very well, and decided that I should do it as a fundraiser and raise money for them.”

The Race

True to their Viking roots, neither of them can back down from a challenge. On March 7, 2020, the first ever ‘Ice Run Across Lake Winnipeg’ will take place. The race will be about 30 km from Grand Beach, Manitoba to Gimli, Manitoba. They will be running to raise money for Save Your Skin Foundation.

Chris is already a quarter of the way to his goal of raising $30,000 for Save Your Skin Foundation. To learn more about Chris’s story or to donate to his campaign, visit his fundraising page here.

For sponsorship info, please contact: chris.i@designerclosetguys.com

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Melanoma Awareness Month – May 2019

May is Melanoma Awareness Month

May is Melanoma Awareness Month and it’s the perfect time of year to review a few easy steps we can all take to Be Sun Safe!

Spread Awareness

Join us in spreading the word about Melanoma Month by using one of our facebook banners as your cover photo! They are available for download HERE:

Sun Safety

Help us share the message about Sun Safety! Download our Sun Safety infographics by clicking on the images below and share with your friends and family!

      

Examine Your Skin

Learn how to perform a monthly skin self-exam!  When caught early, skin cancer is very treatable.

Patient Support

For those living with melanoma, support can be vital to the healing process. Save Your Skin Foundation provides a collection of resources as well as several ways for patients to connect with others or with private support. If you know someone touched by melanoma, please help them to connect with us.

We provide one-on-one support through Founder Kathy Barnard. We also provide support from other patients and survivors through our initiative “I’m Living Proof”

Click HERE for a summary of the ways you can connect with other patients, survivors, and caregivers touched by melanoma and non-melanoma skin cancers, and ocular melanoma.

Press Release

If you’re interested in what Save Your Skin is working on for Melanoma Awareness Month, check out our official press release, which includes vital information about melanoma rates in Canada, prevention and detection, and how to support those battling skin cancer.

Public Service Announcement

Click here to watch our new video cut about sun safety and skin cancer awareness:

 

 

Stay tuned for more updates throughout May – Melanoma Awareness Month!

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SYSF’s Giving Hope Gala 2019

Back by popular demand! Save Your Skin Foundation is hosting our 2nd annual Giving Hope Gala and Auction in Toronto on Wednesday, May 1, 2019.  This year we will kick off Melanoma Awareness Month to increase understanding of skin cancer and ocular melanoma, to raise funds to support the work of the foundation and the patients we help, and to unify collaborative efforts of involved stakeholders nationwide.

Join us for a casual evening of buffet-style tapas and served hors d’oeuvres, decadent desserts, and our signature cocktail – all while supporting an important cause. The fun will include an interactive photo booth, silent auction, informative presentations, music and dancing, printed takeaways, and a goodie bag.

NEW this year – all ticket purchases will receive a tax receipt!

Click here to get your tickets

 

Giving Hope Gala & Auction – May 1, 2019 – St. James Cathedral Centre, downtown Toronto, Ontario

This one-evening event in Toronto will provide up-to-the-minute information on melanoma statistics in Canada, a recap of sun safety and skin cancer prevention methods and initiatives with Kathy Barnard, the Save Your Skin team, and local stakeholders including physicians, patients, survivors, supporters and partners.

Despite being 90% preventable, over 80,000 cases of skin cancer are diagnosed in Canada each year. Of these, more than 7,000 are melanoma, the mostly deadly form of skin cancer. With incidences of this disease on the rise, awareness, education, and patient support are more crucial than ever. Thank you.

Stay tuned for more details.  Check out photos from last year’s Gala HERE

FAQs

Are there ID or minimum age requirements to enter the event?  No – everyone is welcome! Kid-friendly

Dress code?  Business casual – and bring your dancing shoes!

How can I contact the organizer with any questions?  Please email natalie@saveyourskin.ca or call 519-270-0834 / 800-460-5832

Do I have to bring my printed ticket to the event?  No, we’ll have our list handy to make it easier for you!

Can I update my registration information?  Yes, feel free to be in touch anytime.

Is it ok if the name on my ticket or registration doesn’t match the person who attends?  Yes

Thank you to sponsors and supporters of our 2018 Giving Hope Gala & Auction:

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National Post: Therapeutic Spotlight on Immuno-Oncology

On September 26, 2018, you may have seen a special insert in the paper version of the National Post across the country, featuring eight pages of informative articles about immunotherapy, an innovative treatment proving successful in several cancer indications.  This special content is the result of a collaboration between sponsoring funders, patient group representatives, and the folks at a group called Patient Diaries.  Over the years, Patient Diaries has coordinated several series such as this, raising awareness of various diseases and their effective treatments.                                                        This time they chose to highlight Immuno-Oncology.

Researchers and clinicians treating metastatic melanoma have been seeing success with these therapies for about ten years, but the growing use of and experimentation with them in recent years has been the topic of discussion at countless oncology conferences and treatment centres around the world.  In fact, just last month the 2018 Nobel Prize in Physiology or Medicine was awarded to James P. Allison and Tasuku Honjo for their discovery of cancer therapy by inhibition of negative immune regulation: immunotherapy.

Save Your Skin Foundation openly discusses the need for access to these treatments by melanoma patients across Canada, and we jumped on the opportunity to be the primary patient group sponsor of this feature, sharing our collective patient experience with these therapies. On page six of the insert there was an article in which both Kathy Barnard and Natalie Richardson of Save Your Skin were interviewed.  We were also given half a page to display informative anecdotes about ourselves and raise awareness of our ongoing support of skin cancer patients.

In addition to the paper version of the Therapeutic Spotlight, a digital space has been placed on the National Post website.  SYSF awareness spots and our patient video from May 2018 can be seen throughout the Immuno-Oncology board – please feel free to take a look around.  There are additional informative articles about innovative treatments for lung cancer, leukemia, and breast cancer.

There is also a blog written by Natalie Richardson, melanoma survivor and Managing Director of SYSF, discussing the barriers to treatment access that many Canadian patients face.  Click here to read the blog: Cancer Patients Receive Unequal Treatment Depending on Stage or Postal Code

To see what else SYSF is talking about, click here to visit our MEDIA page!

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