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Sty-Lives Can Save Lives: A Conversation with Iveta Voll

Note: this post was authored by Taylor Tomko, Director of Special Projects at SYSF

This month, we are continuing to recruit hairstylists and barbers for our Sty-Lives initiative! Sty-Lives empowers hairdressers to be able to detect suspicious skin lesions on the ears, face and scalp of their clients, facilitating communication between the client and their healthcare provider and leading to earlier detection of potentially dangerous skin cancers. We were recently reminded of the importance of checking the scalp through our community member, Iveta Voll, who unfortunately lost her husband, Steve, in November 2022 to melanoma that initially manifested on his scalp. Recently, I had a call with Iveta, in which we discussed her and Steve’s experience with melanoma and the importance of programs like Sty-Lives.

In November 2019, Steve discovered a scab-like growth on his scalp that he had not previously noticed due to its location. The spot at this point of discovery was already black and large, about the size of a two-dollar coin. After his dermatologist took a biopsy, the spot came back as melanoma that was too deep to be surgically removed. The melanoma had already moved into his lungs, making it stage 4. Steve was immediately referred to a hospital oncologist, and soon began receiving targeted pill therapy to which he had a dramatically positive response. By his next CT scan three months later, all of Steve’s melanoma lesions had vanished. Unfortunately, this treatment does not have a long duration of response, and it only worked for Steve for 14 months.

Once Steve’s melanoma began to return, he began an immunotherapy treatment, followed by another targeted pill therapy, neither of which had positive results. At this point, it was spring 2022. Steve and Iveta were devastated, as the only option left for Steve was a drug trial, hopefully at Princess Margaret Cancer Centre in Toronto. After about a month or so of excruciating waiting, Steve was enrolled in a phase I drug trial, which began just after Thanksgiving 2022. However, this trial meant that Iveta and Steve would have to relocate from Kitchener to Toronto while Steve received the drug. Travelling in four-day cycles between Kitchener and Toronto was challenging for Steve, who had begun to have difficulties catching his breath and an elevated heart rate. A special CT scan showed that he had developed blood clots in his lungs from the cancer. Soon afterwards, it was discovered that Steve’s melanoma had metastasized from his lungs to his liver and was growing very rapidly.

At this point, Steve was told that he unfortunately could not continue in this trial due to the extremely fast-growingmelanoma in his liver. Feeling like they were now truly out of options, Iveta and Steve returned home and updated their local oncologist. It was now early November 2022. At this appointment, Steve was given the devastating prognosis of weeks to months. At the end of that same week, Steve woke up struggling to breathe and his heart rate was extremely high. Iveta called an ambulance, and Steve was admitted to the hospital with a fever, which was likely related to the liver metastasis. Steve stayed in the hospital for five days, spending much time with Iveta, their son, Aaron, and his immediate family. Little did they know that the prognosis of weeks to months would turn out to be just seven short days later; Steve passed away very suddenly on November 8th, 2022 in the hospital surrounded by his loved ones. He and Iveta had been married for 27 years.

Since Steve’s passing, Iveta has started volunteering and is eager to get involved with melanoma-related causes. She, like many of us who have been touched by cancer, wants to ensure that others don’t go through the same painful experience as them. Because Steve’s melanoma appeared on his scalp, she is especially passionate about the Sty-Lives initiative. “Skin cancer is so preventable, and hairdressers can save lives, there’s no doubt about it,” Iveta says, “people visit a hairdresser more often than they visit their family doctor.” Iveta and I talked about the Sty-Lives program at length, including how hairdressers can take on responsibility by having Sty-Lives training, how they can move past any feelings of awkwardness, and how visitors to hair salons can encourage their stylists to get involved. Importantly, as Iveta and I discussed, we are not encouraging hairstylists to try to be doctors or to try to diagnose. Simply alerting their clients of any questionable moles they see on their scalp is sufficient. As Iveta said, “just mention to your client that there’s a suspicious mole(s) on their scalp that they may want to get checked out by a doctor. That’s it. You don’t have to say [whether you] think it’s cancerous or not. Let the client go off and get it explored.”

I raised the question to Iveta about stylists who, for whatever reason, might feel uncomfortable bringing up a mole to their clients. Iveta indicated that the picture is bigger than that, as a hairdresser speaking up could potentially be lifesaving. “I don’t think people are going to get upset if you tell them about a questionable mole or a lesion… I think ninety-nine percent of people would be so thankful,” adding that “it’s better to say more than less.” Hairdressers are, of course, also welcome to ask their clients if they are interested in a mole check at the beginning of the service, to get a sense of whether certain clients will be receptive to it. Iveta asserted that she would certainly be pleased if a hairdresser suggested a mole check during an appointment: “I think if my hairdresser [asked to check my scalp for moles] I would be so impressed. I would give them an extra tip!”

Iveta also brought up the possibility, as citizens who are aware of melanoma, of being proactive with our hairstylists. In addition to mentioning the Sty-Lives initiative to our hairdressers, we can also ask them to keep an eye out for scalp moles during our appointments. “Ask your hairdresser—don’t wait for them,” Iveta suggested, adding that “once that customer asks their hairdresser to check their scalp, guess what? That hairdresser might start doing it for others.” Spreading the word this way, even if hairstylists don’t sign up for the Sty-Lives program, is still extremely beneficial. As Iveta points out, “it’s an issue of awareness, as most people don’t know they can get deadly skin cancer on their scalp.”

Iveta and I finished off our discussion by talking about how to get our own hairstylists involved. If you are reading this and considering mentioning the program to your hairdresser, we encourage you to do so! If they are interested, you can send their contact information to a member of the SYSF team and we will do the rest. We are also currently running the #HairHeroes challenge, where stylists can submit photos or videos of them performing a skin check to be shared on social media. Thank you all for reading and thank you so much to Iveta for her time, thoughts, and support.

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ASCO 2023 Data Report

Earlier this summer, Save Your Skin was fortunate enough to attend the American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago, Illinois, in order to hear the latest data from melanoma clinical trials. We are pleased to present the highlights from these exciting studies in our annual ASCO report, which this year includes data from trials relating to melanoma, non-melanoma skin cancers (NMSC), and uveal (ocular) melanoma. Please keep in mind that ASCO is an international association, and therefore studies outlined in this report are not exclusive to Canada.

This report includes:

  • Trial updates related to melanoma, non-melanoma skin cancers (NMSC), and uveal (ocular) melanoma
  • A glossary of abbreviations used in the report
  • A selection of melanoma-related news articles from the summer for supplemental reading

You can read the report here or by clicking on the cover image below. Thank you for reading!

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8th Annual Patients Redefining the Future of Health Care in Canada Summit

 

The 8th Annual Patients Redefining the Future of Health Care in Canada Summit will be held on Zoom during the week of Nov. 13! This annual patient education and awareness Summit is a joint project between Save Your Skin Foundation and Canadian Psoriasis Network, in collaboration with an Indigenous volunteer from Kiyasiw Consulting.

Join patients, caregivers, and other healthcare stakeholders from across the country to hear from community leaders, advocates, and experts about long-standing systemic issues related to equity and oppression in our health systems and discover how we can work together to truly modernize healthcare to meet the needs of all.

Our schedule for this year:

13 Nov. 11 AM-4 PM EST: Challenges to Meeting People Where They’re At
15 Nov. 12 PM-4 PM EST: Highlighting Indigenous Health Needs
16 Nov. 12 PM-4 PM EST: Opportunities to Modernize Health Care to Meet the Needs of All
17 Nov. 12 PM- 1:30 PM EST: Patient Planning Session- restricted to patients/caregivers and related groups

Ready to register? Click the the link here.

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Patient Fireside Sunshine Chit-Chat: A Virtual Summer Catch-Up

5-6 PM PT | 8-9 PM ET

AUGUST TOPIC

Fireside Sunshine Chit-Chat: A Virtual Summer Catch-Up

This call will last 1 hour!
Fireside Sunshine Chit-Chat: A Virtual Summer Catch-Up
We are delighted to invite you to our upcoming Fireside Chat, where we will embrace the carefree spirit of summer and bask in the sunny side of support! 🌞
This month’s chat will be a summer-themed get-together filled with meaningful conversations and connections. Instead of adhering to a specific agenda, we have designed a relaxed environment for engaging discussions and positive interactions. 🏖️
Whether you have experienced cancer firsthand, are a survivor, a dedicated caregiver, or simply seek understanding companionship, this gathering is tailored to suit your needs. Join us as we share personal journeys, catch up, lend empathetic ears, and forge lasting bonds that will illuminate this summer season. 🌈
Our aim is to cultivate a support community that radiates warmth and comfort. So mark your calendars, share the news, and let’s create unforgettable memories this summer! We look forward to seeing you there!

REGISTER TODAY!

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Move for Melanoma

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 22-24, 2023. 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.

We’ve made it super easy for you to participate! To get started, sign up here. You can register as a Team Captain, as an individual or join an existing team. Once you’ve registered, we’ll email you some resources to help you recruit team members and encourage people to start donating to your team.

Then, on the weekend of Sept. 22-24, we’ll invite you to complete your chosen activity and take lots of pictures to capture the fun.

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Monthly Patient Fireside Chat – Nurturing Wellness and Self-Care in Cancer Patients, Caregivers & Survivors

 

JULY TOPIC

Nurturing Wellness and Self-Care in Cancer Patients, Caregivers & Survivors

Join us for our upcoming July Fireside Chat, where we will be focusing on an important topic that often goes unnoticed – the wellness and self-care of patients, caregivers, and survivors who have faced melanoma, non-melanoma, skin cancers, and Ocular/uveal melanoma in the past.

Amidst the recent discussions in oncology and Survivor Day, we believe it’s essential to take a moment to pause, breathe, and check in on everyone’s overall well-being. Our Fireside Chat will provide a safe and supportive environment for open conversations about wellness, self-care, sharing experiences, and exploring strategies for support.

Whether you have personally battled cancer or have been a caregiver or survivor, we invite you to join us for this meaningful discussion. It’s crucial to acknowledge the emotional impact that cancer can have and provide resources and support for maintaining overall well-being throughout the journey.

Together, let’s create a space where we can listen, empathize, and learn from one another. Mark your calendars and join us for this July Fireside Chat dedicated to nurturing wellness and self-care in those affected by various forms of cancer.

REGISTER TODAY!

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SYSF Survey: The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma

In 2022, we conducted a survey of our English- and French-language patient communities to gather patient-reported experience measures (PREMs) related to the experiences of adults with cutaneous melanoma in Canada. The survey focussed on side effects, the current care landscape, and the holistic experience of cutaneous melanoma. One segment of the survey focussed on the experience of those who received Pembrolizumab (Keytruda™) for stage II melanoma. We invite you to read the report here or by clicking on the image below. If you have any questions, please email info@saveyourskin.ca.

As always, we are grateful to our community of patients who offer their time and stories to us. You are the reason we fight for equitable and timely access to melanoma, ocular melanoma, and non-melanoma skin cancer care for all Canadians.

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SYSF 2023 Sunscreen Dispenser Pilot Launches June 1st!

On June 1st, 2023, SYSF is launching 30 public sunscreen dispensers across five new Canadian municipalities. This is in addition to the 10 dispensers across five municipalities SYSF collaborated on in 2022 with medical student siblings Samuel and Karen Farag.

The bright yellow 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, perfume, and sodium lauryl sulphate. To learn more about the SYSF sunscreen dispenser initiative, see our Sunscreen Dispensers page.

Remember that no tan is a safe tan. While you are enjoying Summer activities, try to limit your time in direct sunlight between 11am and 3pm; seek shade; and cover up by wearing UV-protective clothing, such as long pants, long sleeves, and a hat. Use SPF 30+ broad-spectrum sunscreen (which protects against both UVA and UVB rays), which you should apply 20 minutes before sun exposure and reapply every two hours or directly after swimming. Don’t forget SPF for your lips and your sunglasses!

 

Here is the complete list of dispenser locations:

Grand Bay-Westfield, NB: two dispensers at Brundage Point River Centre and Tail Whip Park/Splash Pad

Lake Cowichan, BC: six dispensers across Lake Cowichan township and Gordon Bay Provincial Park

New Brunswick Fairs & Exhibitions Association: four dispensers to be at 13 fairs and events across New Brunswick

New Westminster, BC: four dispensers across Moody Outdoor Pool, Hume Outdoor Pool, Grimston Park Wading Pool

Penticton, BC: five dispensers across Skaha Meadows Golf Course, Penticton & Wine Country Chamber of Commerce, Penticton Speedway, Barefoot Mini Mart, Travel Penticton

Richmond, BC: four dispensers across South Arm Outdoor Pool, Steveston Outdoor Pool, Watermania

Riverview, NB: two dispensers each in Lion’s Community Park and at events around the city

Summerside, PEI: four dispensers, one each at Summerside Turf Field, Leger Park, Summerside Boardwalk, and one to be used at public events

Vancouver, BC: one dispenser to be installed at the YMCA hotel

Westlock, AB: four dispensers across Westlock skateboard park, Westlock tennis courts, and the Westlock baseball diamonds

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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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One Week Until Move for Melanoma!

All across Canada teams of runners, bikers, hikers, and even laser tag enthusiasts are all preparing to MOVE FOR MELANOMA next weekend!

In our weekend-long fund-and-awareness-raising activity challenge Save Your Skin supporters will be all hands on deck to make this event great.

Friday September 13 kicks off Move for Melanoma with a team of cyclists biking 600 kilometres in the Montreal area, wrapping up the ride on Monday September 16 in conjunction with two shorter rides, 85 kms and 55 kms, in which our very own Kathy Barnard will be biking with her husband alongside the BMS team.

On the Saturday and Sunday in cities all over, participants will do their favourite activities in the name of melanoma patient support – in addition to the run and bike routes people have planned, we have crossfit teams, kayaking, city tour walking, and axe-throwing!

Haven’t yet registered? 

CLICK HERE to view the event website and join a team, create a team, or donate today!

Click on any image below to see what these teams are doing:

             

             

 

Save Your Skin Foundation notes the unique accessibility of the Challenge as an important part of campaign. “Skin cancer can happen to anyone. It’s caused by exposure to ultraviolet (UV) rays from sunlight or tanning beds. We therefore wanted a campaign that was accessible to anyone”, explains Kathleen Barnard, President and Founder, Save Your Skin Foundation and stage four melanoma survivor. “People have come up with very creative ideas that work within their Challenge comfort zones. One team is doing CrossFit, another is doing an axe-throwing contest and I’ll be cycling 55 kilometres in Montreal on Monday!”

Email us to let us know what you’re doing for MOVE FOR MELANOMA! 

Stay tuned for more photos and excitement from the events next weekend.  We will also post thanks to our generous sponsors, including:

Bristol-Meyers Squibb Canada, Montreal, Quebec

AXED Throwing Club, Thornbury, Ontario

Beach City CrossFit, Penticton, BC

MadLab School of Fitness, Vancouver, BC

And many more!

 

 

 

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