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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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WEBINAR: Latest news on melanoma/skin cancer/ocular melanoma from ASCO 2022

(le français suit)

Don’t miss our webinar with Dr. Marcus Butler, the Medical Oncology Disease Site Lead for Melanoma/Skin Oncology at Princess Margaret Cancer Centre and Assistant Professor of Medicine at the University of Toronto. He is also the Clinical Director for the Immune Monitoring Team at the Princess Margaret where he focuses on the immunologic impact of anti-cancer immunotherapies.

This webinar reviews late breaking news, key takeaways, clinical data and other updates presented at the American Society of Clinical Oncology (ASCO) Annual Meeting taking place in Chicago, Illinois, in June 2022.

Dr. Butler shares his key insights into what the landscape of melanoma, non-melanoma skin cancers, and ocular melanoma treatment looks like for the near future in Canada.

Click HERE to view the recording

 

WEBINAIRE : Mise à jour sur le mélanome/cancer de la peau/mélanome oculaire de l’ASCO 2022

Regardez l’enregistrement du webinaire avec le Dr Marcus Butler, responsable du site d’oncologie médicale pour le mélanome et l’oncologie de la peau au Princess Margaret Cancer Centre et professeur adjoint de médecine à l’Université de Toronto. Il est également le directeur clinique de l’équipe de surveillance immunitaire du Princess Margaret, où il se concentre sur l’impact immunologique des immunothérapies anticancéreuses.

Ce webinaire a passé en revue les dernières nouvelles, les points essentiels, les données cliniques et d’autres mises à jour présentées lors de l’assemblée annuelle de l’American Society of Clinical Oncology (ASCO) qui a eu lieu à Chicago, en Illinois, en juin 2022.

Le Dr Butler a partagé ses idées clés sur ce à quoi ressemble le paysage du traitement du mélanome, des cancers de la peau autres que le mélanome et du mélanome oculaire dans un avenir proche au Canada.

Cliquez ici pour le webinaire

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Check out our national and international Melanoma Awareness Month initiatives!

May is Melanoma and Skin Cancer Awareness Month

This May, Save Your Skin Foundation and Ocumel Canada are running local, national and international campaigns to raise awareness on the importance of prevention and early detection of skin cancers. See a full list of our Melanoma Skin Cancer Month and Ocular Melanoma awareness initiatives HERE.

For the third year in a row, Save your Skin Foundation’s proclamation initiative has invited Canadian municipalities to take a stance against skin cancer and educate their communities on sun safety through mayoral proclamations. Over 38 municipalities across 8 provinces have issued signed Proclamations to proclaim the month of May 2022 ‘Melanoma and Skin Cancer Awareness Month’.  Look for your city on the list here

Members of our SYSF team have also had the honour to present to the Mayors and Councils of a dozen municipalities across the country to share their experiences as patients and spread the message of sun safety and early detection of skin cancer.

Skin check awareness

Save Your Skin Foundation is part of the Global Melanoma Coalition, a group of 43 organizations from 28 different countries bringing the patient voice to the melanoma space. The below videos have been created in collaboration with the Global Coalition.

It’s funny what you can miss when you’re not looking for it. Watch the Global Coalition video and learn the importance of checking your skin for melanoma and skin cancer:

Skin self-exam tutorial

This video covers the ABCD&E warning signs of melanoma and skin cancer, and the seven steps for checking the body. Pauses between the seven steps have been included in the film, so you can simply take your phone or tablet into a bathroom, hit play, and follow the instructions in real time:

 

#EyePatchDay

Having regular eye examinations could save your life! Routine eye tests can lead to early detection of ocular melanoma and many other health issues. However, statistics show that we are not visiting the optometrist as frequently as we should.

Make a commitment to booking an eye exam this month!

Visit OcumelCanada.ca to learn more

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Giving Hope Gala 2022 Recap

~ le français suit ~

Thanks to all supporters of our 2022 Giving Hope Gala!

From all of us at Save Your Skin Foundation, we wish to express heartfelt appreciation for all of the love we received in support of our 2022 Giving Hope Gala. Thank you to all who purchased tickets, made donations, joined us at the event, sponsored the Gala, donated gifts to the auction – everyone! Not only did we have a blast hanging out around the pool, but we raised important funds for melanoma, non-melanoma skin cancer and ocular melanoma patients.

Thanks also to:

  • The devoted and caring oncologists, dermatologists, nurses, and medical teams who look after us and all of the patients and caregivers we support;
  • Our sponsors and funding partners for supporting our work tonight and throughout the year;
  • Our team of volunteers without whom we couldn’t do so much;
  • Everyone who helped put this event together – our amazing team – Marianne, Amy, Natalie, Kathy and Rosemary, and our board of directors, family and friends who always pitch in;
  • And most of all, the patients, survivors, and caregivers who are behind the Foundation from all over Canada. They are the inspiration behind our devotion to their well-being, and we are honoured to work on their behalf every day;
  • A HUGE thank you to the amazing and hilarious host of our Gala Awards Ceremony, Professor Mark Z. Spot! If you missed the ceremony, you can watch the short video below to find out who won.


Merci à tous ceux qui ont soutenu le Gala donner l’espoir 2022 !

De la part de toute l’équipe de la Fondation Sauve ta peau, nous tenons à exprimer notre profonde gratitude pour tout l’amour que nous avons reçu à l’occasion de notre Gala donner l’espoir 2022. Merci à tous ceux qui ont acheté des billets, fait des dons, se sont joints à nous lors de l’événement, ont commandité le gala, ont donné des articles pour la vente aux enchères – tout le monde ! Non seulement nous avons eu beaucoup de plaisir à faire la fête autour de la piscine, mais nous avons également récolté des fonds importants pour les patients atteints de mélanome, de cancer de la peau non mélanome et de mélanome oculaire.

Merci également :

  • Aux oncologues, dermatologues, infirmières et équipes médicales dévoués et attentionnés qui s’occupent de nous et de tous les patients et soignants que nous soutenons;
  • Aux commanditaires et partenaires financiers qui ont soutenu notre gala et notre travail tout au long de l’année;
  • À notre équipe de bénévoles sans qui nous ne pourrions pas faire le travaille important que nous faisons.
    À tous ceux qui ont contribué à l’organisation de cet événement – notre équipe formidable – Marianne, Amy, Natalie, Kathy et Rosemary, ainsi que notre conseil d’administration, nos familles et nos amis qui nous aident toujours;
  • Et surtout, aux patients, survivants et soignants qui se sont joints à nous lors du gala, ou qui soutiennent la Fondation à travers le Canada. Ils sont la source d’inspiration de notre dévouement à leur bien-être, et nous sommes honorés de travailler en leur nom chaque jour;
  • notre lettre de remerciement ne serait pas complète sans un ÉNORME merci à l’hôte incroyable et hilarant de notre cérémonie de remise des prix du gala, le professeur Mark Z. Spot ! Si vous avez manqué la cérémonie, vous pouvez regarder la courte vidéo suivante pour découvrir les gagnants.

 

 

 

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See what we have planned for Melanoma Awareness Month 2022!

This year, Save Your Skin Foundation is running local, national and international campaigns to raise awareness on the importance of prevention and early detection of skin cancers. See a full list of our Melanoma Month initiatives HERE.

 

Press Release

Click here to read the news, April 29, 2022: Save Your Skin Foundation Runs Local, National and International Campaigns to Increase Skin Cancer Awareness During Melanoma Awareness Month

 

A common diagnosis with a rare outcome – Helen’s Story

Almost a decade ago, in 2013, Helen found a spot along her hairline that worried her. Two different doctors told her it was nothing to worry about before a dermatologist recognized it as cancerous and had it removed. And that was that, she was assured. Most skin cancers are easily dealt with and life goes on. But, based on her pathology report, Helen had a feeling that this ordeal was far from over.

It takes a village to stand up to cancer: Helen’s story via Macleans.ca

 

Sty-Lives OPHA Challenge

We have partnered with the Ontario Professional Hairstylist Association (OPHA) to create the Sty-Lives OPHA Challenge, which aims to train 200 hair professionals to detect potential skin cancers by May 31, 2022.

The initiative behind the challenge is Styling Hair & Saving Lives (Sty-Lives). Led by two medical students, with the support of SYSF, it aims to empower and educate hairstylists and barbers to detect suspicious skin lesions on the ears, face and scalp of their clients. Participating salons and barbershops are provided with training materials and resources and are taught how to detect suspicious spots. The purpose of the project is to help facilitate communication between the client and their healthcare provider, leading to earlier detection of potentially dangerous skin cancers.

As of this writing, the Sty-Lives OPHA Challenge has already reached 83% of its recruitment goal.

 

Melanoma Month Apparel

Check out our Melanoma Month Collection of Shirts perfect for the melanoma warrior or supporter in your life. As always, the proceeds from the sale of our SYSF merchandise goes directly towards supporting patients when they need it most. Visit our Etsy Store!

 

Thanks to Giving Hope Gala 2022 Sponsors & Supporters

This year’s pool party-themed gala was a lot of fun. A huge thank you to all who joined us and an even bigger thank you to all our sponsors who donated generously to make this event a success. We’ll have more information on the gala, including lots of pictures, in our next newsletter, so stay tuned!

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Ocumel Canada Seeking Input for Ocular Melanoma Patient Experience Survey

~ Le français suit ~

Ocumel Canada invited all ocular melanoma patients at any stage, whether or not they have been treated with KIMMTRAK® (tebentafusp-tebn) for metastatic OM, to participate in this anonymous survey intended to gather patient/caregiver perspectives to inform treatment recommendations. We were looking for ocular melanoma patients to share their treatment experiences to help inform Save Your Skin Foundation’s treatment recommendations to the CADTH Common Drug Review (CDR) and to pan-Canadian Oncology Drug Review (pCODR).

By providing direct patient feedback we can help inform Canadian government decision-makers of the patient need, and potentially increase treatment options, therefore improving treatment outcomes.

This survey is now closed – stay tuned for the resulting report!

Thank you for your time. Together we can make a difference.

 

Nous invitons tous les patients atteints de mélanome oculaire, quel que soit leur stade, qu’ils aient ou non été traités par KIMMTRAK® (tebentafusp-tebn) pour une MO métastatique, à participer à ce sondage anonyme destiné à recueillir le point de vue des patients et des soignants afin d’élaborer des recommandations de traitement.

En fournissant des commentaires directs des patients, nous pouvons aider à informer les décideurs sur les besoins des patients, et potentiellement augmenter les options de traitement, améliorant ainsi les résultats du traitement.

Nous vous remercions de votre temps. 

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Updates on the Sty-Lives Program

Launched in December 2021, the Styling Hair and Saving Lives – Sty-Lives – program has been a huge hit!  Hair professionals, hair salons, and barbershops all across Canada are registering and using the resources created to help in the early detection of skin cancers. Click HERE to learn more about the free training program and resources, and see below for some of the media coverage the program is getting across Canada and in the U.S.

Recently, we also launched the Sty-Lives OPHA Challenge in partnership with the Ontario Professional Hairstylist Association!  Read more HERE and click HERE to watch the video about the program.

Stay tuned for announcements on additional partnerships we are building!

 

CBC

Global News Radio

CTV News

CHIPCHICK

BeautyCouncil.ca

Good Morning America
ABC News
yahoo!news

Eastlink
NY Post
Castanet Penticton

Squamish Chief
The U.S. Sun
MSN

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SYSF Seeking Input for Melanoma Patient Experience Survey

~ Le français suit ~

We invited all melanoma patients in any stage who received Keytruda™ or other systemic treatment(s) to complete the survey at the link below, intended to gather patient/caregiver perspectives to inform treatment recommendations. Patients sharing their treatment experiences helps inform Save Your Skin Foundation’s treatment recommendations to the CADTH Common Drug Review (CDR) and to pan-Canadian Oncology Drug Review (pCODR).

By providing direct patient feedback we can help inform Canadian government decision-makers of the patient need, and potentially increase treatment options, therefore improving treatment outcomes.

This survey is now closed – stay tuned for the resulting report!

Thank you for your time. Together we can make a difference.

 

Nous invitons tous les patients atteints de mélanome, quel que soit le stade, ayant reçu le Keytruda™ ou un ou plusieurs autres traitements systémiques à répondre à ce sondage, destiné à recueillir le point de vue des patients et des soignants afin d’éclairer les recommandations de traitement.

En fournissant des commentaires directs des patients, nous pouvons aider à informer les décideurs sur les besoins des patients, et potentiellement augmenter les options de traitement, améliorant ainsi les résultats du traitement.

Nous vous remercions de votre temps. 

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Looking Back at 2021

Our 2021 Annual Reports are out now!

It’s always a rewarding experience to look back on the past year and see how much the Foundation has accomplished.

Despite another year amid the pandemic, Save Your Skin Foundation and Ocumel Canada have continued to grow partnerships, operations and services, and reach more people touched by melanoma, non-melanoma skin cancer and ocular melanoma.

We are extremely grateful to our community of patients, caregivers, healthcare providers and sponsors who continue to inspire and support us in our endeavors.

Click on the images below to view the reports:

 

 

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