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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 prioritizing 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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November is Ocular Melanoma Awareness Month

November is Ocular Melanoma Awareness month – and it is the time of year we at Save Your Skin Foundation and Ocumel Canada bring extra public awareness to the importance of dilated eye exams for the detection of ocular melanoma.

Through our work, we will continue the conversation and maintain the #EyeGetDilated campaign beyond November, so that all Canadians can learn about their options for head to toe body health and to include eye checks in their list of doctor exams.

Early detection is incredibly important for many eye diseases, including ocular melanoma. Ocular melanoma is rare, affecting approximately five in a million people. About 200 cases are diagnosed per year in Canada. While it represents only 5% of melanomas, ocular melanoma can be rapid and aggressive, accounting for 9% of melanoma deaths. Also referred to as uveal melanoma, ocular is a more inclusive term; 90% of primary ocular melanoma develops in the choroid.

To read more about the importance of annual dilated eye exams, click on Brianne’s story below:

We are proud to have partnered with the groups BC Doctors of Optometry and Alberta Association of Optometrists!

 

 

 

 

 

 

For more information about Ocumel Canada and the work we do, visit any of the following pages:

OcumelCanada.ca

About Ocular Melanoma

Helpful Links

Resources and Support

If you or someone you know has been diagnosed with primary or metastatic ocular melanoma, connect with our community of support, Canadian bilingual Facebook group:  Ocular Melanoma Connect/Connexion mélanome oculaire 

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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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Upcoming Webinar: Prognostic Testing and What It Means to Ocular Melanoma Patients

Join us for a free webinar on Wednesday, September 14 at 5pm PST | 8pm EST.

In this webinar, Katherina Alsina, PhD, Castle BioSciences, Dr. Ezekiel Weis, Provincial Medical Lead, Alberta Ocular Brachytherapy Program, and Dr. Marcus Butler, Medical Oncologist, Princess Margaret Cancer Centre, will help patients understand prognostic testing when diagnosed with Ocular Melanoma. They will also discuss options for HCPs for prognostic testing, what it can mean to patients and how it can affect treatment decisions. The presentations will be followed by a live Q&A session.
Click here to register
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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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Big steps forward in OM treatment & support in Canada

Ocumel Canada in the News

As Ocumel Canada continues to support and advocate for patients touched by ocular melanoma (OM), we are happy to see a monumental step forward in the treatment of this disease across Canada. Last week, Health Canada granted a notice of compliance (NOC) for Kimmtrak® (tebentafusp) for the treatment of metastatic ocular melanoma, closely following approvals in the United States, Australia, and the European Union.

Many patients with this rare cancer have been needing to travel from their home provinces coast to coast – to Toronto – for treatment, which is not an ideal situation for any patient, as they need to be close to their home and support system for ease and comfort as they fight this disease. Ocumel Canada is happy to report that in partnership with treating Physicians and Partners we are making progress in this situation and getting patients treated closer to home.

Global News spoke to two patients in this interview, click HERE to watch the recording.

Ocumel Canada and Save Your Skin Foundation applaud Health Canada’s approval of Kimmtrak® (tebentafusp) for the treatment of unresectable or metastatic uveal melanoma in HLA-A*02:01-positive adult patients. We now hope that every province and territory will take swift steps to list this drug on their public formularies in order to make this therapy available to patients across Canada.

We thank all patients and their caregivers who shared their experience and feedback to this process. To learn more about this immunotherapy treatment and the approval, read our full press release by clicking HERE.

To add to all of this great news – we wish to invite all Canadian OM patients or caregivers to join the VISION Registry, an online research database created by our friends at CureOM, Melanoma Research Foundation.

The database will allow researchers to better understand ocular melanoma (OM) as well as the needs and preferences of patients. For example, researchers can look at the socio-demographics, genetics, accompanying conditions, and treatments of patients from around the world and any potential links to OM that might exist.

The research will also look at patients’ experience from onset of symptoms to confirmed diagnosis and how that can be improved.

For the VISION Registry to be successful we need as many patients as possible to securely share their data. There is power in numbers!  Please register and add your information to the registry. We are eager to learn together to advance knowledge and eventually find a cure for OM.

(At this time, the registry is available in English only, but we are working on a French-Canadian translation, stay tuned!)

Click here to learn more and join the Vision Registry: https://melanoma.org/visionregistry/

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Cancer Survivor Day 2022

The term ‘survivor’ can mean different things to different people. For some, a survivor may have completed active treatment and is free from any signs of melanoma or non-melanoma skin cancer. For others, the term may refer to anyone who has been diagnosed with melanoma skin cancer, or any type of cancer, at any point in their journey.

During treatment, just getting through each day can take all of the energy we have, making it hard to think about anything else, especially life after treatment. After treatments are over, many people experience mixed emotions of being glad it’s over, yet anxious about what the future may hold. This may be an unexpectedly challenging period of adjustment, so be sensitive to your own needs. Don’t expect to always feel good now that you’re out of treatment, and take the time you need to come to terms with what you have been through.

How can we define ‘survivorship’?

‘Survivorship’ can have many different meanings, depending on your outlook on the situation. The Canadian Cancer Society suggests a way of defining a cancer survivor as anyone who:

~ has finished and is recovering from their active cancer treatment
~ is on maintenance therapy
~ is having ongoing treatment for cancer that is stable and slow growing
~ is on active surveillance
~ is in remission or “NED” – having no evidence of disease

At wherever point you are in your cancer experience, ‘survivorship’ means simply what it means to you. If you believe that you are a survivor, take this label on and be proud of your strength!

Save Your Skin Foundation wishes to bring hope and support to all those newly diagnosed, currently undergoing treatment, or to those referred to as “NED.” We have several resources and sources of information and support listed through our website, some of which include:

Updated Canadian Statistics on Cancer Survivorship

The number of newly diagnosed cancer cases in Canada is increasing, but survival rates are also increasing, resulting in a greater need to address the unique challenges of cancer survivorship. Survival rates are increasing thanks to innovative medicines such as immunotherapy and targeted therapy treatments, many of which were first invented and tested for the treatment of melanoma skin cancer.

The 5-year survival rate for melanoma in 2015-2017 was 89%. Read our 2022 distillation of the CCS report with a focus on melanoma:  SYSF Recap Report – Canadian Cancer Society Statistics 2021

Hand in Hand, We Fight Skin Cancer Together – More Resources at these links:

Survivorship
Self-Care After Cancer 

Innovative Treatments – Taking Patients from Diagnosis to Survivorship

Decision-Support Tool For Stage III Melanoma
Customized for the Canadian audience, this pamphlet is a document to provide/discuss with patients that helps guide their decision making regarding next steps for stage III melanoma. Reviewed by Save Your Skin Foundation, updated February 2021:
Options for Stage III Melanoma ~ Making the Decision That’s Right for You

Want to learn how to use the Stage III Decision-Support Tool? Peruse frequently asked questions about Stage III melanoma and learn how to use the support tool to guide your decision making. Also developed in collaboration with Save Your Skin Foundation, updated February 2021:
Options for Stage III Melanoma: Making the Decision That’s Right for You, Companion Piece

Decision-Support Tool For Stage IV Melanoma
Newly customized for the Canadian audience, this pamphlet, created by AIM at Melanoma and reviewed by Save Your Skin Foundation in March 2022, is a document to support patients and help guide their decision making regarding next steps for stage IV melanoma:
Stage IV Melanoma Treatment Options: Making the Decision That’s Right for You
The document addresses:
– Stage IV melanoma clinical picture, biomarkers and pathology, and disease and patient factors involved in decision making
– Efficacy, safety, administration, and family-planning aspects of targeted therapies, immune checkpoint inhibitors, and other therapies used for stage IV melanoma

I’m Living Proof

When Save Your Skin Founder Kathy Barnard was diagnosed with metastatic malignant melanoma in 2003, the first thing she did was look to the internet for anything that would inspire optimism for her prognosis; hopeful news, survivors, or treatment options. She didn’t find much. Now as you can see there is a plethora of information and resources to help us though our skin cancer journey.

At any time, you can contact us at info@saveyourskin.ca, or call Kathy directly at 1-800-460-5832

You can also find other patients or survivors on our I’m Living Proof map of stars – request to connect with someone on the map, choose to share your story, or simply read through others’ experiences – you are not alone.

 

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