melanoma canada

PeerVoice – Advances in Adjuvant Melanoma Therapy

We are pleased to announce that the PeerVoice activity entitled ”Advances in Adjuvant Melanoma Therapy: Working Together To Improve Outcomes’’ has now launched online. SYSF is proud to endorse this work, and applauds the valuable work put into this educational resource.

This initiative features two expert panel discussions, verbally presented by:

Michael Smylie, MBCHB, FRCPC, Edmonton, Alberta

Joël Claveau, MD, FRCPC, Quebec City, Quebec

Carolyn Nessim, MD, MSc, FRCSC, FACS, Ottawa, Ontario

Presentation 1: Adjuvant Melanoma Therapy: Optimizing the Care Pathway

Presentation 2: Adjuvant Melanoma Therapy: Experts Appraise the Evidence

These verbal interview-style presentations are also available as downloadable transcripts, click here to view or read the presentations: PeerVoice: Advances in Adjuvant Melanoma Therapy

PeerVoice activities are designed to fill the unmet needs of the medical community by reporting information pertaining to clinically relevant advances and developments in the science and practice of medicine. This independent learning activity is supported by Merck Canada Inc.

NEW! December 2019: Minding the Melanoma Patient With Brain Metastases: Updates to Personalize Care

Listen to the recording, and/or download the presentation, by:
Marcus Butler, Medical Oncologist, University of Toronto | Princess Margaret Cancer Centre

Raising the Bar With Immunotherapy for Melanoma and Kidney Cancer: Strategies to Enhance Care. This independent learning activity is funded by Bristol-Myers Squibb Canada Co.

Thank you to all SYSF Supporters!

As Melanoma Awareness Month draws to a close, we would like to thank all of our family and friends, volunteers, partners and supporters for their continued dedication to upholding the work done by the team at Save Your Skin Foundation. We are dedicated to providing a community of oncology patient and caregiver support throughout the entire continuum of care, from prevention and diagnosis to survivorship. And with your help, that is what we are able to do.

Thanks to all who have donated to the upcoming Team Save Your Skin events – Rosemary’s D-Day 44 Challenge Run in Normandy next week, and to Chris’ Vikings Challenge Run Across Frozen Lake Winnipeg in March 2020. Thanks also to all participants joining our MOVE for MELANOMA event this September – the teams are rolling in!

We were absolutely overwhelmed by the generosity of those who attended our Giving Hope Gala & Auction in Toronto on May 1st. The work we are able to do for patients is a direct result of your support, and for that support we are so grateful. Have a look at our Photo Gallery! Here is a sneak peek:

Move for Melanoma! 2019

On September 13 – 16, 2019, Save Your Skin Foundation is co-hosting a special Canada-wide fundraising event called MOVE FOR MELANOMA, a weekend-long challenge where teams participate in the activity of their choice (get creative!) while fundraising for the fight against melanoma. Pick your city/community, pick your activity, and ready set go – Get MOVING for MELANOMA!

What is it?
Move for Melanoma challenges all Canadians to reach their own personal movement challenge (ex. walking, running, cycling, yoga, family activities, or other) while raising awareness and funds to support Canadians touched by melanoma, non-melanoma skin cancer, and ocular melanoma.

How to Get Involved
We’re asking all of our close friends and patients to become Team Leaders to participate in Move for Melanoma. Our team will help you organize the event, will create a personalized, easy-to-use fundraising platform just for you, and support you in getting the word out. Anyone interested can check out our customizable fund raising platform OR email our Team Save Your Skin coordinator Taylor Tomko at taylorkathleen@saveyourskin.ca

Fund Raising
Funds raised through the Move for Melanoma challenge will go directly to helping Canadian melanoma, skin cancer, and ocular melanoma patients by supporting the work of the foundation and the patients we help both emotionally and financially, and advocating for all patients to have timely, equal access to life-saving treatments and therapies through health policy work.

Learn more about MOVE FOR MELANOMA – Visit the official fundraising page HERE!

Melanoma Awareness Month – May 2019

May is Melanoma Awareness Month

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

Spread Awareness

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

Sun Safety

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

Examine Your Skin

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

Patient Support

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

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

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

Press Release

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

Public Service Announcement

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

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

Introducing: Ocumel Canada

For the past year, Save Your Skin Foundation has been working with ocular melanoma (OM) survivor and advocate Nigel Deacon, to improve OM patient care across the country. Together we created a survey and resulting report in order to gain insight into the Canadian OM patient journey, and we have connected with innovative OM treatment researchers as well as explored testing options in Canada for ocular melanoma, also known as uveal melanoma. Additionally, we have partnered with OM patient support groups around the world, such as Cure OM (an initiative of the Melanoma Research Foundation, United States), and Ocumel Ireland and Ocumel UK.

We are inspired by the work being done by these groups, and by the feedback we receive from patients who need better support in their diagnoses of primary and/or metastatic ocular melanoma, to work toward better and more standardized care in all provinces in Canada. We have identified gaps in OM patient care which can vary from centre to centre, and we recognize the need to advocate for patients to receive treatment for their disease, especially when it is metastatic.

In order to continue this work and raise awareness for this rare disease and the patients who need support to handle it, we have created a dedicated initiative called Ocumel Canada, which will serve as our platform for increasing education and community around the topic.

Ocumel Canada strives to do the following:

Advocate for early detection of ocular melanoma
Enable access to early treatment of primary ocular melanoma
Work towards a consistent approach to treatment of metastatic ocular melanoma
Support patients who have been diagnosed with primary or metastatic ocular melanoma
Build a network of support for patients and caregivers

Ocumel Canada will work with health care providers and HTA decision-makers across Canada to improve ocular melanoma patient outcomes. We applaud the work being done at the two busiest centres for referrals, and we wish to help extend treatment options to patients in remote areas and to provinces who do not currently participate in the same practices available to OM patients in areas such as Toronto, Ontario. Advocacy for increased patient access to clinical trials, even if in other countries, is also an aim for Ocumel Canada.

Today we begin with a new hope for Canadians diagnosed with ocular melanoma.

Click here to read the press release: Launch of OCUMEL CANADA Offers New Hope for Canadians Diagnosed with Rare Ocular Melanoma

Stay tuned for updates on our progress! And tune in Friday February 15, 2019 to our webinar Ocular Melanoma: Innovative Treatments and Beyond, with Dr. Butler of Princess Margaret Cancer Centre, and Dr. Hamid from The Angeles Clinic and Research Institute, in Los Angeles, California, U.S. This webinar will provide an update on the landscape of metastatic ocular melanoma treatment in Canada and the United States. Dr. Hamid and Dr. Butler will share their knowledge of current practices and care pathways, identifying the most pressing needs for patients. They will also discuss innovative treatment options such as IMCgp100, as well as clinical trials available to Canadian patients with ocular or uveal melanoma. Nigel Deacon will share his experience with this rare cancer; Kathy Barnard will facilitate the discussion.

For more information about ocular melanoma and the Ocumel Canada initiative, please feel free to explore the information we have put together for our website at www.ocumelcanada.ca , email ocumelcanada@saveyourskin.ca, or call us at 1-800-460-5832.

We have created the following pages to provide up-to-date links and resources:

Ocumel Canada – About Ocular Melanoma

Ocumel Canada – Helpful Links

Ocumel Canada – Resources and Support

Ocumel Canada – 2018/2019 Strategic Plan

https://www.instagram.com/p/BsqaD2xgyf6/

SYSF Webinar: Treatment Options for Melanoma Patients in the Adjuvant Setting

Join us for this free webinar, which reviews the latest news and clinical data related to melanoma treatment in the adjuvant setting, as presented in the 2018 conference season.

‘Adjuvant’ refers to patients with a stage II or stage III diagnosis. The majority of adjuvant patients typically undergo surgery to have their tumour(s) removed, but are not given immunotherapy or targeted therapy to prevent recurrence of the disease despite a known high-risk of relapse and mortality. Melanoma is an aggressive cancer; stage III melanoma means the cancer has spread from skin cells into the lymphatic system, and poses a dangerous risk for spread to organs, which is what depicts a stage IV diagnosis.

Dr. Claveau shares his key insights into what the landscape of adjuvant melanoma immuno-oncology treatment looks like for the near future in Canada. Dr. Adrian Gunaratne details the science behind targeted therapy and what is coming for Canadian melanoma patients in the adjuvant setting with a BRAF positive mutation. The discussion continues with a patient and a caregiver both having had treatment access challenges in the adjuvant melanoma setting, and how their experiences impacted their lives and that of their families.

Presenters:

Dr. Joel Claveau, Medical Oncologist, Hotel-Dieu de Quebec, Université Laval, Quebec City, QC
Adrian Gunaratne, PhD, Medical Science Liaison – Solid Tumors, Novartis Pharmaceuticals Canada
Natalie Richardson, Adjuvant Melanoma Patient, Managing Director, Save Your Skin Foundation
Eyyub Hajiyev, Caregiver to a loved one recently diagnosed with melanoma in the adjuvant setting

SYSF Teams up with La Roche-Posay Canada at OneWalk Toronto 2018

Last weekend I went for a 15 kilometre walk— as in, 15 kilometres all at once. Two short years ago I could not have done that, being in recovery from surgeries and treatment for advanced melanoma, I was not physically or psychologically capable of such a feat. This year however, I was grateful to walk 15 kilometres (in 3.25 hours!) alongside a team dedicated to raising funds for melanoma research at Princess Margaret Cancer Centre in Toronto.

I was motivated to join this team this past spring, when our new sponsor La Roche-Posay Canada told me they were doing the OneWalk Toronto 2018, and suggested perhaps I could join them as a representative of melanoma survivors and Save Your Skin Foundation (SYSF). I was thrilled but also anxious about this idea – could I really do it?

We each had a fund-raising goal and friendly instructions to meet at Nathan Phillips Square in downtown Toronto on Saturday September 8, 2018 at 7:30am. Being as I was a guest on the team I didn’t have to do any of the heavy lifting, but I was there early enough to witness the hard-working team at La Roche-Posay (LRP) setting up, distributing sunscreen samples, and greeting walkers with encouraging smiles and high-fives.

I was thrilled to meet some of the folks I had been speaking or emailing with for months – it was so great to put faces with names. I had done events with LRP in the past, but this was a large local project in which SYSF and I both feel quite invested.

La Roche-Posay, with their sunscreen line, is a huge proponent of melanoma prevention, and the partnership we were demonstrating at the OneWalk was that of awareness and education. LRP is also a sponsor of the OneWalk Toronto event and were obviously enthusiastic about being able to bring awareness to sun safety and skin cancer prevention to all participants. They had a shade tent and sunscreen samples and tester bar, as well as their new “My UV Patch.”

My initiation into the team that morning was the presentation of my name tag and lanyard for the walk. I did not expect the rush of emotion when my new friend put my lanyard on me – it was a special coloured one, reserved for the cancer survivors of the crowd.

Not having participated in the OneWalk before, I was unexpectedly dazzled by the supportive community and encouragement to cancer patients and survivors at the event. Everyone everywhere was respectful of and very loving to those of us with the rainbow lanyards.

At one point during the opening ceremonies, the MC asked everyone with a rainbow lanyard to remain standing, and everyone else to kneel on one knee. Our team happened to be at the front near the stage, so when this happened I was glad I had my back to most of the hundreds of people in the square all around me – my tears were flowing at this point – I was so overwhelmed I almost got down on one knee too. I was incredibly humbled by the honour I felt by this moment of silence in cancer survivors’ memory and support.

Team LRP raised over $20 000 for Princess Margaret Cancer Centre, a decent portion of the total raised $4.7 million by 3200 walkers from all over Canada. I could clearly see why the event is so successful; it is very well organized, and cancer patient care is the obvious topic at hand. Princess Margaret Cancer Centre staff and supporters made speeches in the opening ceremonies, and a couple of the Research Team Leads also got up on stage to address the crowd. Overall, it was a fabulous representation of this centre, which happens to be one of the top five in the world for cancer care research and innovation.

Even one of our Medical Oncologist friends and SYSF Medical Advisory Board members from PMH was present – he had done the Friday evening NightWalk – but he came after lunch Saturday to meet with the La Roche-Posay team. I am thrilled to report I got a hug from him; I couldn’t stop more tears when he thanked me for participating in the event. It’s not very often I get to thank him in person for all that the HE does for melanoma patients like me.

I’d like to extend huge thanks to my new friends from Team La Roche-Posay Canada, not only for their warm welcome and hard work at OneWalk Toronto 2018, but also for their dedication to skin cancer prevention and awareness all year-round. I look forward to helping facilitate the initiatives Save Your Skin Foundation and La Roche-Posay will be working on together – stay tuned for updates!

Team LRP with Toronto Mayor John Tory

Team LRP at the Finish!

By Natalie Richardson,

Metastatic melanoma survivor and advocate, Managing Director, Save Your Skin Foundation

SYSF Survey! Melanoma Treatments for Adjuvant Patients

Save Your Skin has the opportunity to submit patient feedback to the pCODR process for the two treatments coming to the Adjuvant setting for Melanoma patients in Canada. To learn more about the drug approval process and our involvement as a patient representation group, please visit our page: “Let’s Chat: Patient Submissions and Discussion”

We believe the ability of stage I, II, and II melanoma patients to receive innovative treatments is key to survival, and to the reduction of progression to stage IV disease.

To inform our upcoming submission, we have created a short survey and request that any and all patients touched by melanoma complete the survey to have their voices heard. This survey is open globally, to all stage melanoma patients at any point in their journey; but we request that IF you are a metastatic patient taking the survey, but were diagnosed at stage 1, 2 or 3 could you please take some time to remember back to those days and fill in what you can in the survey pertaining to those times. Were you offered a treatment, were you advised to “wait and watch” and what were those times like for you and your family.

This anonymous survey is now closed. We thank all who shared their time and experience in responding to the survey. Stay tuned for news of our completed submission to pCODR and INESSS.

If you have any questions or feedback about this topic or the survey itself, please email info@saveyourskin.ca

Thank you!

Calling all STAGE I, II & III MELANOMA PATIENTS in Canada!

Please participate in this survey regarding preferences for adjuvant treatment of melanoma in Canada. The ANONYMOUS SURVEY will require approximately 30 minutes to complete.

Sponsored by Novartis, the information in this study may be included in research publications and submissions to agencies that evaluate and make recommendations regarding reimbursement of treatments for patients in Canada.

To participate, please CLICK HERE. The survey will remain open for completion until midnight (EST) on Friday, August 17, 2018.

In order to qualify for participation, you must (1) currently reside in Canada, (2) have a current diagnosis of local or regional melanoma (Stage I, II, or III), and (3) be at least 18 years of age. Individuals who reside outside of Canada, do not have melanoma or currently have metastatic melanoma (Stage IV), or are younger than 18 years of age are not eligible to participate.

If you have any questions, you may contact the study manager or the sponsor directly using the contact information below:

Study Manager

Study Sponsor

Daniel Stellato, BS

Research Analyst

Policy Analysis Inc. (PAI)

Four Davis Court

Brookline, MA 02445

USA

Phone: 617-232-4400

Email: dsetllato@pai2.com

Marroon Thabane, PhD

Manager, Health Economics and Outcomes Research

Oncology Business Unit

Novartis Pharmaceuticals

385 Bouchard Blvd.

Dorval, Quebec H9S 1A9 CANADA

Phone: 905-512-3755

Email: marroon.thabane@novartis.com

About Policy Analysis Inc. (PAI)

PAI is a health economics and outcomes research (HEOR) organization providing services to the global biopharmaceutical industry located in Brookline, Massachusetts, USA (https://www.pai2.com).

About Novartis

Novartis is a global healthcare company that provides solutions to address the evolving needs of patients worldwide (https://www.novartis.ca/en).

Introducing BMS Study Connect

At a recent meeting in Montreal with the Bristol-Myers Squibb Canada (BMS) team, we found a fantastic new resource they have launched to improve patient communication and access to BMS clinical trials.

Their website, “BMS Study Connect” is a user-friendly platform to allow patients and caregivers to easily search for new, open, upcoming, or past clinical trials for BMS products in any health indication. It provides background information on diseases treated by their pharmaceuticals, plus has a search bar and links to more information for several diseases including fibrosis, cardiovascular and autoimmune diseases, plus several types of cancer including head & neck cancer, blood, gastrointestinal, genitourinary, and lung cancers as well as melanoma.

BMS has done a lot of research in melanoma over the years and is credited with the creation of ipilimumab (Yervoy) which has greatly contributed to the shift toward an increase in melanoma survivorship. Currently their ipilimumab-nivolumab combination treatment is in great demand, and they are working on yet other possibilities for the treatment of melanoma. On BMS Study Connect, patients can search for any open trials involving these treatments or others, and can even answer a few qualifying questions to figure out if they may be eligible to participate in a new trial.

If a patient finds a clinical trial they would like to learn more about, they can print out the details from BMS Study Connect and take it to their medical team to see if and where they may be able to participate. By clicking on the “Pre-Screen Now” button patients can enter their details as applicable and find more information. Some of the information on BMS Study Connect is sourced from the reputable clinicaltrials.gov website, which adds the ability to connect patients with applicable trials outside of BMS.

BMS Study Connect allows for patients to better understand their clinical trial options and experience, and allows them to communicate with BMS in a way that makes the situation more personal. BMS genuinely cares about the patient experience in their clinical trials, and is making a great effort to show that through this online presence.

There is also the option for patients to connect with other patients to discuss their trials or topics related to their condition. By clicking on the word “Community” at the top of the site, users will be re-directed to the secure and free website inspire.com, and invited to join the BMS Clinical Trial Support Community in which they can chat with other patients and share experiences.

At this time the community is overseen by representatives from the United States, but it is open globally, and there is Canadian participation. It is beneficial to draw from the experiences of others even in the States at this point, as their population of BMS-product-recipients is larger in general, therefore there is more information to be gleaned from fellow trial participants.

We are grateful that BMS has taken this initiative to better support patients, and we applaud their efforts. BMS Study Connect is a valuable resource and we hope to share this website far and wide, help to increase patient access to clinical trials and help them to understand their options and better navigate the clinical trial process and follow-up. Check it out here: BMS Study Connect

PeerVoice – Advances in Adjuvant Melanoma Therapy

Thank you to all SYSF Supporters!

Move for Melanoma! 2019