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ASCO 2021 Conference Report by SYSF

The 2021 American Society of Clinical Oncology Annual Meeting took place from June 4-8, 2021. Given the COVID-19 pandemic, the convention was conducted entirely online. This event brings together over thirty thousand oncologists, pharmaceutical representatives, and patient advocates from across the world and across cancer types for five days of networking, learning, and presenting new research. Every year, Save Your Skin Foundation puts together a report of the panels regarding innovative treatments in the melanoma sphere. In this report are detailed recollections of these panels, categorized by topic. All information offered in this report is the intellectual property of the presenter and their team, as cited by the report.

Click here to read the report!

Every year, melanoma and uveal melanoma become more widely covered by clinical trials. While the continued innovation of treatment for these cancers is exciting, it means that we were unable to include every presentation and abstract related to melanoma, uveal melanoma, and non-melanoma skin cancers. Therefore, abstracts and presentations that provide updates on safety profiles of past studies and abstracts that do not produce promising clinical results have been excluded. We have also excluded abstracts which, at the time of the meeting, did not have confirmed data.

The informational resources cited in this report are a combination of the transcripts and slides from the ASCO meeting library. All images are courtesy of the author of the respective talk. Any queries may be directed to natalie@saveyourskin.ca

If you are interested in more information from the ASCO 2021 annual meeting, Save Your Skin Foundations is pleased to offer a Post-ASCO 2021 Update with Dr Omid Hamid video concentrated on melanoma, non-melanoma skin cancers, and ocular melanoma. Click HERE to view the recording on youTube

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!

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 Canada – click 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:

Calling All Non-Melanoma Skin Cancer Patients – Survey 2021

We invite all non-melanoma skin cancer patients having had surgical procedure(s) and/or systemic treatment to take this 10-minute anonymous survey to share their feedback:

The Patient Experience: Surgical and Systemic Treatment of Advanced Basal Cell Carcinoma and Squamous Cell Carcinoma Skin Cancers

Information gathered from this survey will be part of Save Your Skin Foundation’s recommendations to the CADTH Common Drug Review (CDR) and the pan-Canadian Oncology Drug Review (pCODR), and will help us better understand discussions that skin cancer patients have with their surgeons along the treatment continuum.

This survey is now closed. Thanks to All for their feedback and support.

Stay tuned for the resulting report.

Train Like the Canucks

We are thrilled to be partnering with Vancouver Canucks’ JT Miller and his wife Natalie this year to fundraise during Move for Melanoma.

Train Like the Canucks is a team that can be joined by anyone. People who join the team are challenged to complete a workout designed by JT Miller himself with the help of his trainer, which emulates a typical workout performed by the Vancouver Canucks hockey players.

All who join the team will be entered into a draw to win a signed Vancouver Canucks’ jersey and other prizes.

Funds raised by Train Like the Canucks will go to Save Your Skin Foundation, the only organization in Canada that supports skin cancer patients financially when they need it most, in the form of treatment costs, flights, accommodation and other necessary but costly expenses incurred while receiving treatment.

To learn more about JT Miller and his wife’s connection to Save Your Skin Foundation, watch the short video below.

Join Train Like the Canucks

Q&A

How can I join team Train Like the Canucks?

To join, start by clicking here to register. On the registration page, select “Train Like the Canucks” from the list of activities. If you’re a new user, create an account. If you’re a returning participant, login to your existing account. *If you’ve already registered for another team for this year’s event, you will have to join with a different account using a different email address.* There is a $25 registration fee to join the Train Like the Canucks team.

Does it cost money to be part of Train Like the Canucks?

There is a $25 fee to be part of Train Like the Canucks. All proceeds will go directly to supporting skin cancer patients in need. You are also encouraged to make a donation and to invite your friends and family to support the cause. We thank you in advance for your support.

When will I receive the Canucks workout plan?

Once you are registered with Train Like the Canucks, you will receive the workout plan by email within a couple of weeks. If you don’t receive it within two weeks, please look in your spam folder or contact marianne@saveyourskin.ca.

I tried joining Train Like the Canucks but I got an error message saying I’m already registered. What should I do?

Unfortunately, you cannot be part of more than one team with the same account. That means that if you’ve already registered for Move for Melanoma this year, you’ll have to create a separate account to join Train Like the Canucks. To do so, you will need to use a different email address. If you don’t have two email addresses and want to join, please email marianne@saveyourskin.ca to make arrangements.

Move for Melanoma 2021

Move for Melanoma is back!

This year, we’ll be joined by Vancouver Canucks’ JT Miller and his wife Natalie to raise funds for melanoma skin cancer.

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 illnesses when they need it most.

This year, the event will take place on September 25-26th, 2021. 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 2021 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!

#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

SYSF Endorses the Declaration of Personal Health Data Rights in Canada

SYSF is pleased to announce that it has endorsed an important new initiative, aimed at advocating for the personal health data rights of Canadians. Developed by a patient and caregiver-led Data Working Group formed in 2019 from the annual Patients Redefining the Future of Healthcare in Canada Summit, the Declaration of Personal Health Data Rights in Canada is intended to create greater consensus on the fundamental principles associated with personal health data, particularly from the perspective of patient and citizen groups; in order to encourage the health ecosystem to work out how to achieve these principles efficiently and effectively in partnership with industry, policy-makers, other data custodians, and patients.

The working group undertook a brief review of the current landscape related to personal health data. Various drafts were revised with feedback from a range of health data custodian perspectives, but with a major focus on the perspectives of patients, caregivers, citizen groups and patient group such as SYSF. Since the Declaration’s launch in June 2021, it has been endorsed by 27 patient groups as well as 9 individual patients and caregivers.

Personal health data are critical to patient safety and quality care leading to better health outcomes, while fuelling research and innovation to benefit individuals, groups, and the general public. The Supreme Court of Canada has found that people own and have a continuing interest in and control over their personal health data, while custodians of those data own the records. Because of this, people in Canada have corresponding rights over the personal health data they provide. These eleven rights are: to be informed; to consent; to access, portability & correction; to de-identification; to benefit; to object to processing; to restrict processing; to a complaint process; to privacy & security; to erasure; and to engagement.

The Declaration is available in two formats. To read or download the full Declaration, click here. To read the Executive Summary of the Declaration, click here.

SYSF Around the World

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

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

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

– Natalie Richardson, Managing Director, SYSF

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

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

Click HERE to view and download the Guidelines

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

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

Also:

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

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

Adjuvant therapies in melanoma – a guide to navigate treatment options

As part of Melanoma Awareness Month, Save Your Skin Foundation proudly partnered with the Melanoma Network of Canada to create a patient guide on navigating adjuvant therapies for melanoma. Download your copy HERE!

What is Stage III melanoma?

Stage III melanoma has spread to the lymph nodes. Stage III can be divided into 4 categories based on the evolution of the tumour and the extent of the spread to the lymph nodes. These categories are classified as A, B, C and D. These 4 categories are used to determine prognosis and treatment of the melanoma.

What is primary treatment for Stage III melanoma?

Surgery may be recommended once diagnosis is confirmed. The goal of surgery is to remove the cancer and the affected lymph nodes to minimize the risk of the cancer returning.

What is the genetic mutation of the tumour?

The tissue that was removed during surgery will be tested for specific gene mutations. Certain mutations can alter a gene. For example, approximately half of all melanomas have a mutation in the BRAF gene. Identifying associated gene mutations can help determine if additional treatment options such as targeted therapies are recommended.

Once you know the stage of the melanoma, you can discuss next steps of care with your health care professional. Click here to view the complete guide detailing treatment options and FAQs for your appointment with your Medical Oncologist:

ASCO 2021 Conference Report by SYSF

Click here to read the report!

Move for Melanoma After Party

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!

Ocumel Canada News!

And in other Ocumel Canada news…

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

Calling All Non-Melanoma Skin Cancer Patients – Survey 2021

Train Like the Canucks

Join Train Like the Canucks

Q&A

Move for Melanoma 2021

Move for Melanoma is back!

#InItTogether Campaign – Melanoma Is Personal

SYSF Endorses the Declaration of Personal Health Data Rights in Canada

SYSF Around the World

Click HERE to view and download the Guidelines

Adjuvant therapies in melanoma – a guide to navigate treatment options

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Adjuvant therapies in melanoma – a guide to navigate treatment options

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And in other Ocumel Canada news…

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

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Move for Melanoma is back!

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