Francais
info@saveyourskin.ca

melanoma treatment

Adjuvant Patient Survey: here is the full report!

In September 2018, Save Your Skin Foundation (SYSF) conducted an anonymous survey of melanoma patients in the adjuvant setting (diagnosed at a stage lesser than stage IV).  This survey, titled “Melanoma Treatments in the Adjuvant Setting,” was open globally, and we received responses from all over Canada as well as from the United States, New Zealand, and Australia.

The survey consisted of 28 questions, which ranged between multiple choice, multi-selection, and write-in, and participants had the option to skip any question. The goal of the survey was to assess the impact melanoma has on patients and their families and caregivers, and get a picture of the treatment plan of the average melanoma patient, what treatment access limitations they have encountered, and what they look for in potential treatment options.

The responses to this survey were used to inform SYSF submissions to provide direct patient feedback as treatment recommendations to pCODR and INESSS.  We provided these submissions with all of the patient comments to support the message that melanoma patients in the adjuvant setting need access to immuno-oncology treatments to prevent their disease from growing into a stage IV diagnosis.

Thank you to all participants who took the time and care to share their perspectives.  We have every hope that the drugs in the pipeline for adjuvant will be approved in every province and territory in Canada.

To read the full Survey Report, please click HERE To request any additional information about the survey please feel free to email info@saveyourskin.ca

 

Read more

Introducing “Redefining Cancer Treatment” by Merck

We are excited to announce that one of our partners, Merck, has launched an informative new website dedicated to educating the public about immuno-oncology. 

“Redefining Cancer Treatment” is an apt title for the topic: what is cancer immunotherapy, and how does it work, exactly? These questions are answered in a few pages and a downloadable infographic, all in language that is easy for patients and their caregivers to understand.

RedefiningCancerTreatment.ca discusses two main cancer types which are showing response to immuno-oncology treatments – Melanoma skin cancer, and Non-small cell lung cancer. It also has a page which lists all of the treatments currently available in Canada for the treatment of these diseases.  This example of collaboration and transparency is an excellent representation of the innovative attitude it takes for work in a field such as this to develop and, ultimately, save lives.

To view the website click here: RedefiningCancerTreatment.ca     |    To view the two-page infographic please click here: Cancer Treatment at a Glance

Merck also has an interactive website listing enrolling clinical trials for their treatments, in cancer and in other indications.  Click HERE to view the site and search for your disease type: Merck Clinical Trials

 

We are grateful that Merck has taken this initiative to better support patients, and we applaud their efforts.  Redefining Cancer Treatment is a valuable resource and we hope to share this website far and wide, help to increase patients’ awareness of immuno-oncology and the options they may have when faced by melanoma skin cancer.

Read more

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! 

Read more

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).

Read more

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

Read more

Introducing Our New Forum on HealthUnlocked

At Save Your Skin Foundation we are always looking for new and innovative ways to increase knowledge and support for Melanoma Patients and Caregivers.

After extensive review we have found an amazing online forum in HealthUnlocked.  HealthUnlocked is a global peer-to-peer support network.  We have joined with HealthUnlocked to create a community called “Melanoma Wellness Canada.” It is a secure platform for patients and caregivers to connect with other Canadians touched by melanoma.  Within HealthUnlocked you also have the ability to connect with other melanoma communities from around the world.

The discussions that happen in the SYSF community are moderated by our staff, but the conversation is open to any HealthUnlocked members who wish to participate.  We will keep you updated on events and news from Save Your Skin Foundation, plus new and alternative resources to help patients cope with life after a melanoma diagnosis – and we have even started a book club to share recommended readings!

You will recognize us by our logo; we look forward to chatting with you more.  You will begin to see information about HealthUnlocked around our website, and you are welcome to contact us anytime with questions or feedback at lyanne@saveyourskin.ca

Melanoma Wellness Canada will be officially launched this Cancer Survivors Day on Sunday, June 3, 2018.

To connect to our conversations on the home page of Melanoma Wellness Canada please click HERE!

We look forward to working with you to develop a great Melanoma resource. Hand in Hand We Fight Melanoma Together.

Read more

Webinar: About BioSimilars

As a kick-off to our 2018 webinar series, Save Your Skin Foundation presents:

About Biosimilars: What We Know and What We Want to Know

Friday, January 19, 2018 at 1pm – 2pm EST | 10am-11am PST

Presenters: Louise Binder, SYSF Health Policy, Cathy Parker, Director Policy and International Collaboration – Health Canada, and Helen Mai, Policy and Strategy Advisor, CADTH.

This webinar will be a panel discussion on Biosimilars in oncology, the approval process, and the potential policy position for oncology drug reimbursement. Discussion Points will include Health Canada’s review and approval for sale, CADTH’S role in this area and their involvement with pCPA, and potential policy objectives and position for oncology drug reimbursement.

Updated January 23, 2018:

Missed the webinar?  Listen to a recording of the presentation here, or view it on our youTube channel here.  Also please click here for a page of Resources regarding Biosimilars.

 

Read more

Save Your Skin Foundation’s British Columbia Government Reception

Save Your Skin Foundation, along with the support of MLA Jane Thornthwaite, welcomed MLAs from the BC Legislative Assembly to a reception and presentation on various new melanoma treatments that have become available in Canada and explained how they are changing the landscape for melanoma patients and increasing survivorship.

With the recent emergence of new treatments, there is now a real hope of survivorship for melanoma patients. Previously, many melanoma patients could only expect a survival rate of 10%. With a variety of new treatments released in recent years, these figures are improving drastically. There is real hope for survivorship.

Save Your Skin Team

Save Your Skin Founder Kathleen Barnard welcomed the MLAs and explained how a collaborative effort is needed to ensure that patients are receiving timely access to the best available care. With these new treatments, and the knowledge that more are coming soon, patients, doctors, pharmaceutical companies and government decision makers all have an important part to play.

Dr. Vanessa Bernstein, leading dermatologist with the BC Cancer Agency, explained the nitty gritty of these new treatments and how they will soon become the standard of care.

Melanoma survivor and friend of Save Your Skin, Nigel Deacon, closed the reception with an inspiring word. Nigel is a Victoria resident and was diagnosed with terminal ocular melanoma, but thanks to a trial treatment of a new drug, he has been stable for more than two years. This new treatment is the same drug that saved the life of Save Your Skin Founder Kathleen Barnard.

Thanks to Supporters

Coming straight from the World Cancer Congress in Vienna, the Save Your Skin team received a helping hand from sponsor Harbour Air who flew us directly from downtown Vancouver to downtown Victoria in order to be on site, on time.

The Save Your Skin team was warmly greeted in sunny Victoria by MLA Jane Thornthwaite and treated to a tour of the BC Legislature and a chance to attend the House Question Period.

Victoria Conference Centre was instrumental in putting together this important reception & presentation.

Save Your Skin Foundation-Web Optimized-21 Save Your Skin Foundation-Web Optimized-29 Save Your Skin Foundation-Web Optimized-38 Save Your Skin Foundation-Web Optimized-41 Save Your Skin Foundation-Web Optimized-53 Save Your Skin Foundation-Web Optimized-50

Read more

Immunotherapy Fights Deadly Cancer- Meloney and Kathy Share Their Stories

IMMUNOTHERAPY FIGHTS DEADLY CANCER

|

spectrumadvisors-featimg-mole

Immunotherapy is the latest advance in the way cancer is treated, using the body’s own immune system to fight otherwise deadly disease. Meloney Edghill knows it can work.

spectrumadvisor-advimg-meloneyandson

Meloney also knows what the mother of a young child thinks about when told she has terminal cancer. She chokes back tears remembering: “I was worried it would kill me before my 4-year-old son would have any memories of me. I didn’t want him growing up and not remembering me at all.”

That was in April 2006. The fact that Meloney is still here to tell her story – and watch her son grow to a teenager – is thanks to the development of the newest form of cancer treatment, immunotherapy. Unlike the traditional approaches to cancer treatment – surgery, radiation, chemotherapy and targeted therapy – immunotherapies are drugs that release the natural brakes on the body’s own immune system so it can fight and kill the cancer cells.

In April 2006, the young mother was living in Edmonton and had a lump growing on the front of her shoulder. When she went to the doctor to check it out, it was too late.  She was diagnosed with metastatic melanoma, the most serious form of skin cancer.  It accounts for just 8 per cent of skin cancer cases, but is responsible for 70 per cent of deaths from the disease.

When she was first told she had melanoma, Meloney didn’t realize the implications. “I initially thought they would just cut it out and everything would sort of be OK after that,” she recalls. “We found out very fast that it was not that simple and in fact there were very few options.  We were devastated.”

At the time, the average life expectancy for someone with Meloney’s diagnosis was about six to nine months. That October, she enrolled in a trial of a new melanoma immunotherapy that was in an early study.

In January 2007, when tested to see how she had responded, Meloney was taken by surprise. “All of my cancer was just about gone after that,” she says. “It was unbelievable to my doctors and nurses that something had worked that well and that quickly.” According to her doctor, today Meloney is cancer free and her son, who is a now a teenager, has grown up with his mother at his side.

Meloney’s experience with the treatment is not shared by all melanoma patients, but the immunotherapy she took has shown good results in studies. It has been approved for use in Canada and other countries and is the first-ever treatment shown in clinical studies to improve survival of patients with metastatic melanoma.  Ongoing research continues to give new hope to those diagnosed with the disease.

Today there are even newer immunotherapies available.  The latest ones work in different ways to stimulate the immune system, shutting off a different one of the “checkpoint inhibitors” which act as natural brakes on the immune system and prevent it acting against cancer cells. These newer immunotherapies are also being studied with promising results in combination with the older drugs in melanoma and as potential treatments for a wide variety of other cancers and are showing promising results.

“Immunotherapy has completely transformed the way advanced melanoma is treated.  Just a few years ago patients who were diagnosed were desperate and many were told to ‘get their affairs in order’. In just a short period this cancer went from being defined as a deadly disease to a cancer that patients may be able to survive,” says Kathy Barnard, Founder and President of the Save Your Skin Foundation, a melanoma patient support organization that also aims to educate the public on the importance of protecting the skin from the sun’s harmful ultraviolet rays, a major risk factor for skin cancer.

“What’s even more exciting is that there is ongoing research with immunotherapy which means more treatments are available to patients to give them options.  Can you imagine?  Advanced melanoma patients have treatment options to survive?  I never dreamed this would happen in my lifetime. I’m here today witnessing history being made.  In fact, I’m living proof of it,” Kathy adds. She herself is a melanoma survivor, another beneficiary of the same treatment that helped Meloney.  Kathy has since devoted herself to helping others and educating about the disease.

For more information please visit imlivingproof.ca

Copyright 2015 ZoomerMedia Limited

Read more