cancer

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.

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!

SYSF Collaborates with National Comprehensive Cancer Network

The National Comprehensive Cancer Network^® (NCCN^®) is a not-for-profit alliance of 28 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, efficient, and accessible cancer care so patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers around the world.

Though these guidelines are developed with best practices in use in the United States, the resources do apply to patients and clinicians in Canada (where treatment options and accessibility apply), as confirmed with members of the Save Your Skin Foundation Medical Advisory Board. Canadian doctors do refer to the NCCN clinical guidelines, and they do support the distribution of NCCN patient guidelines to Canadian patients.

There are guidelines created for many cancers; we have listed below the links to each most relevant to the topic of skin cancer or ocular melanoma, as well as supportive topics such as immunotherapy or treatment side effects, and mental wellness issues and survivorship. NCCN guidelines are easy to read, well illustrated, and a valuable resource for patients, available as online e-booklets, download-able PDF files, or on the “NCCN Guides for Cancer” app for iPhone or Android devices and tablets.

Today marks an exciting day for non-melanoma skin cancer patients, with the release of the new booklet, NCCN Guidelines for Patients^®: Squamous Cell Skin Cancer, endorsed by Save Your Skin Foundation, and made possible by funding through the NCCN Foundation^®. This new book of patient information explains prevention, diagnosis and treatment for squamous cell skin cancer—the second-most common skin cancer (after basal cell cancer). Squamous cell and basal cell skin cancers are responsible for about 5 million annual incidents of non-melanoma skin cancer in the United States¹—making them more prevalent than all other types of cancer combined². Incidence rates have been rising for squamous cell skin cancer in recent years, particularly in younger people³. (source)

This new booklet explains in detail the diagnosis of squamous cell skin cancer, treatment and procedure options, but it also provides personal accounts from patients who have experienced the SCC journey, as well as treating centres and patient resources such as a list of questions to ask at doctor appointments. Save Your Skin Foundation is pleased to support these new guidelines document, and to help connect patients with the resource, as well as to connect NCCN with patients who so generously shared their perspectives with us for the development of the booklet.

SYSF has every confidence that the new NCCN Guidelines for Squamous Cell Carcinoma will help patients understand and manage their skin cancer diagnosis, treatment, and recommended follow-up routine. This comprehensive resource gives skin cancer patients a reliable checklist to inform decisions in their care, which is much-needed for this common form of cancer, and even more helpful in the metastatic setting.

We look forward to continued collaboration with NCCN, and will offer our support with any new skin cancer guidelines or updates to existing booklets.

To view the guidelines, please click the links below:

NCCN Guidelines for Patients^®: Squamous Cell Skin Cancer

NCCN Guidelines for Patients^®: Melanoma

NCCN Clinical Practice Guidelines^®: Uveal Melanoma

NCCN Guidelines for Patients^®: Distress

NCCN Guidelines for Patients^®: Adolescents and Young Adults with Cancer

New! NCCN Guidelines for Patients Explain How to Recognize and Manage Immunotherapy-Related Toxicities, July 2020:

Click here to view the new NCCN Guidelines for Patients®: Immunotherapy Side Effects series

Virtual Library of NCCN Guidelines^® App – Available for iPhone/iPad and Android Smartphone/Tablet

February 28, 2019 press release detailing news of the NCCN Guidelines for Patients^{® ~} Squamous Cell Skin Cancer: New Patient Resource from NCCN Clears up Confusion around Highly Common Type of Skin Cancer

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

Take the All.Can Patient Survey in Canada

Can you help to shape the future of cancer care? Check out this patient survey launched in Canada.

In healthcare, inefficiency is often caused by neglecting to focus on what matters most to patients. A new international patient survey is gathering insights on inefficiencies in cancer care and is asking Canadian cancer patients (and their carers) to share their thoughts and experiences on where inefficiencies occur, and how cancer care could be improved. Findings will be revealed later this year and used to inform policy discussions on improving cancer care for all.

The survey is being administered by All.Can (www.all-can.org), an international multi-stakeholder policy initiative focused on improving efficiency in cancer care. Please share your thoughts, to ensure the patient voice can be at the heart of cancer care. #PatientsAllCan

For more information and to complete the survey for Canada or other countries, visit: http://patientsurvey.all-can.org

As a member of All.Can International, Save Your Skin Foundation has been working closely with the administrators of this survey, and is here to support you. If you would like further information or need help with the survey or subsequent reporting of survey responses, please contact us at info@saveyourskin.ca

Thank you!

Financial assistance and support that you might find useful

Updates on our Support of Mental Wellness After Melanoma Diagnosis

In the summer of 2017, Save Your Skin Foundation conducted a patient survey seeking insight on the emotional and psychological impact of a melanoma diagnosis, in order to expand on our personal experiences and to learn how we may be able to help improve support systems for patients and survivors across Canada.

Since the release of the report from that survey (click here to read the report), we have developed a poster for display during our upcoming attendance at the 12th Annual Canadian Melanoma Conference (February 2018). This poster is titled:

THE AFFECTS OF MELANOMA ON THE MENTAL WELLNESS OF PATIENTS, AND THE LANDSCAPE OF MENTAL HEALTH SUPPORT IN THE CANADIAN MELANOMA COMMUNITY

We welcome the discussions that the information in this poster will inspire, and we will continue to bring voice to the challenges that are faced by those who are touched by melanoma skin cancer.

To read the poster we have created from the survey results, please click on the image below to view it in PDF format, in which you will be able to zoom in on the small text and graphs.

The survey was conducted in English using the SurveyMonkey online platform. It was also made available in French for Quebec residents. The English survey was open from August 21, 2017 to September 25, 2017; the French survey was open from August 28, 2017 to September 25, 2017. There were 28 participants in the English survey, and 19 in the French survey. French to English translations were largely performed by our in-house translator, Danika Garneau. The English and French results are combined for the purpose of this project. The poster will provide an overview of the survey results. For any feedback or questions, please contact natalie@saveyourskin.ca.

To view the complete survey responses, please click here:
Save Your Skin Foundation Mental Health Survey 2017 – English
Sondage sur la Santé Mentale de la Fondation Sauve Ta Peau 2017 – en Francais

Stay tuned for updates on our work in mental wellness and self-care after cancer diagnosis.

Melanoma Patient Support Group Webinars

All patients, survivors, family members, and caregivers are invited to join these informal monthly webinars to connect with other patients and survivors across Canada. Join one or all three:
Thurs, February 1, 2018
Thurs, March 1, 2018
Thurs, April 5, 2018

5pm PST | 8pm EST

We know the importance of having a good support network during difficult times. This is why we decided to organize a recurring support group by Webinar. Although melanoma patients and survivors are scattered all over Canada, these webinars will allow them to talk to others going through similar experiences from the comfort of their own home. Founder Kathy Barnard will be in attendance, along with other members of the SYSF team. Whether you’re a patient or a caregiver, we hope that you will take part in this virtual discussion around melanoma, treatments, and hope.

CLICK HERE TO REGISTER

Within 48 hours of registering for this webinar, you will receive an email from natalie@saveyourskin.ca providing you with the link and dial-in details for this group call in gotoMeeting. You will be able to choose if you wish to share your webcam with all participants, or participate in call-in mode only.

Thank you, and hope to chat with you soon!

Updating the ABCDE’s of Skin Checks

We have long known that monthly skin self-examination is an important piece of a vigilant routine for a healthy life. Everyone should check their own skin – and that of their loved ones – for any irregularities or atypical markings, lumps or bumps. Early detection is key, and can make all the difference in the case of any melanoma OR non-melanoma skin cancer diagnosis.

At the World Congress of Melanoma last fall, we learned that there are two new letters in the traditional ABCDE’s of skin checking: F and G

F for Firm – is the mole harder than the surrounding skin?

G for Growing – is the mole gradually getting larger?

As the alphabet of skin-checking grows, so does our awareness of the importance of the following:

A – Asymmetry. The shape of one half does not match the other half.

B – Border that is irregular. The edges are often ragged, notched, or blurred in outline. The pigment may spread into the surrounding skin.

C – Color that is uneven. Shades of black, brown, and tan may be present. Areas of white, gray, red, pink, or blue may also be seen.

D – Diameter. There is a change in size, usually an increase. Melanomas can be tiny, but most are larger than 6 millimeters wide (about 1/4 inch wide).

E – Evolving. The mole has changed over the past few weeks or months.

F – Firm

G – Growing

Save Your Skin Foundation has developed new post-card style brochures to share this information, which remind us of these helpful tips that could save the skin we’re in. Check out the images below or on our downloadable resources page, and if you would like to receive some of these cards for your awareness or educational event, please contact info@saveyourskin.ca and we will send you some!

In the meantime, check your skin – all over! – and ask your doctor about any concerns you may have.

Holiday Melanoma Patient Support Webinar

Join our Holiday Patient Support Webinar on Thursday, Dec 28, 2017 at 1pm PST | 4pm EST.

All patients, family members, and caregivers are invited to join this informal, free webinar to share and connect with patients and survivors across Canada.

Click HERE to register

Save Your Skin Foundation knows the importance of having a good support network during difficult times. This is why we had the idea to organize a support group by Webinar. Since we are scattered all over Canada, we thought it would be a good idea to be able to talk to people and hear them, but in the comfort of your own home. Founder Kathy Barnard will be available to discuss, along with other members of the SYSF team. Whether you’re a patient or a caregiver, we hope that you will take part in this virtual discussion around melanoma, treatments, and hope.

Understanding the pan-Canadian Pharmaceutical Alliance (pCPA) and how it affects those fighting skin cancer

Guest blog post by Elizabeth Eakin

Within Canada, many patients are forced to move outside of their homes to receive the treatment they need. As skin cancer is affecting more and more Canadians each year, a high volume of patients all over Canada are forced to travel in order to receive their suited treatment. Currently, Melanoma is the fasting growing cancer in Canada, with an estimated 6,800 diagnosed in 2015. As the incidence continues to increase, greater access and availability to treatment are needed. One of Save Your Skin foundations immediate goals is to provide melanoma patients with access to information about trial drugs as well as provide financial support to allow patients access to their suited treatment. This is an intricate and expensive task that takes knowledge of the drug process within Canada to fully understand.

Within Canada, drug authorization of sales is an extremely long process. It can take up to two years before the drug is approved for review. During these transparent years, the trial drug undergoes scientific testing’s regarding safety, effectiveness and quality of manufacturing. From there, the pan-Canadian Oncology Drug review products, Common Drug Review (CDR) and the non-oncology drugs review (pCODR) overlook the drug. The review time includes comparisons to existing drugs on the market as well as cost-effective evaluations. Once assessed, the review is sent out to all participating federal, provincial and territorial drug benefit plans in Canada, which make the pan-Canadian Pharmaceutical Alliance (pCPA). They decide whether joint pan-Canadian negotiations will occur for the drug product. If they decide to move forward, one jurisdiction will lead with the manufacturer, while an agreement between all other participating jurisdictions will be signed. If an agreement can be reached between participating jurisdictions and the manufacturer, a letter of intent will be signed and shared with all participating jurisdictions. After the pCPA process, each jurisdiction is then responsible for individually making a decision on funding through their public drug plan. These plans are then entered into a jurisdiction specific product listing agreement with the manufacturer.

After this long process individuals can gain access to the pharmaceutical drug depending if the province supports and funds it. The specificity of which provinces/territories provide access and funding makes the process long and tumultuous. In order for each patient to get the treatment they need, many need to travel, adding further expenses and stress. For those struggling with skin cancer, the Save Your Skin foundation does all it can to provide patients with access to trial treatments as well as financial and emotional support. As a foundation, we want to help each patient receive the best individual care possible, so they can fight their hardest against this disease.

Figure 1: pan- Canadian Pharmaceutical Alliance

PeerVoice – Advances in Adjuvant Melanoma Therapy