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A Patient’s Perspective on the World Congress of Melanoma

In October I traveled to Brisbane, Australia to attend the 9th World Congress of Melanoma, a joint meeting with the Society for Melanoma Research.  To be there as a melanoma patient was an incredible honour, and to be there as a representative of Save Your Skin Foundation was even more so.  I have been working with Save Your Skin for over a year; after a couple of years of volunteering as a patient advocate and blogger as I recuperated from my surgeries and treatments, I turned my professional interests into full-time support of this Foundation that does so much for melanoma patients.

Ever since I was diagnosed with metastatic melanoma in 2014, I have been hungry for information about this disease, and I had always wanted to attend this conference – my medical Oncologist can attest to that, as every year I would schedule my appointments with her immediately after the conference so I could grill her about all the latest news.  This year she did not attend, but I did.

It was an incredibly educational and inspiring experience, and I have much to report.  So much so, that I have taken this long to write a blog to update our website, because I have found it to be a great challenge to put into words a summary of all that I learned at the WCM2017.

I will start off by reporting that if, after reading this piece, you still have questions as to specific information you might like to learn more about, please comment below or email me and I can get you details on what you would like to know. 

 

We can provide you access to watch recordings of many of the sessions I saw in person, plus others that are available on the WCM website.  We will also share this on our social media: should you wish to receive more information than what I am able to summarize in this blog, please reach out and we will provide.

Approximately 1,500 delegates attended this Congress, and they included Medical and Surgical Oncologists, Dermatologists, Skin Specialist-Physicians of varied backgrounds, Researchers, Pharmaceutical Company Reps, General Practitioners, and a smattering of Patient Advocacy Groups (such as SYSF).

At the Opening Ceremonies of the Congress, attendees were given an extensive presentation on the history of melanoma research in Australia and other centres, the epidemiology (the branch of medicine dealing with the incidence and prevalence of disease in large populations and with detection of the source and cause *) of melanoma and non-melanoma skin cancers, and their relation to the carcinogen solar ultra-violet.

It was an interesting account of skin cancer statistics in Australia, and a comparison of melanoma to other skin cancers behaviours, namely their response or reaction to “solar circulating factor.”  In this session I learned that there is a COMPLETE ban of sunbeds in Australia.  I also learned that the Congress was being held in the sunny state of Queensland, Australia, which – sadly – has been dubbed the “melanoma capital of the world.”

As an aside… it was spring-weather cloudy the entire week we were there so there were many jokes throughout the sessions that we were all gathered in the melanoma capital of the world and with no risk of exacerbating any skin cancer what with all the rainy cloudy skies!  There are countless interesting roof and overhead structures all around Brisbane to protect residents from the sun, though that week they served well to protect from the rain.

Also in this address was mentioned the importance of early detection in skin cancer – “delay can be deadly.”  There was discussion of advancement in diagnosis of melanoma in situ, and an update of the efforts of targeted screening for melanoma: targeted screening fails as it only gets a minority of the population – even patients with no risk factors develop melanoma.  Dermatologists and General Practitioners are the real heroes in early recognition, said Dr. Harold Kittler, but also people and their family members are key to prevention and early detection.

Also in this session were introduced the NEW “F and G’s” of the ABCDE’s of skin cancer detection. 

F = Firm and G = Growing.  More on this to come – SYSF is currently updating our materials to reflect the complete ABCDEFG method of skin cancer detection.

I was also pleased to observe an introduction to teledermoscopy and clinical methods including the use of our very own Canadian-invented MoleScope™ – a huge photo of it right up there on the big screen! In the poster displays I also found the published study about MoleScope™ and its use in Canada, for more details please see their website.

Throughout the rest of that day and the next three, I attended sessions which I will list below.  There were so many open for attendance, so I tried my best, but I still didn’t hit all of the ones I would have liked to attend.  I have notes for each, and most are recorded, so enter here the reminder that if you would like more detail on a specific session, please email me any time and I will connect you with the details.  (We are not permitted to post them all openly, plus there are so many we couldn’t possibly fit them all on our website.)

Surgical Oncology: Primary Melanoma Management

Margins of excision, current recommendations and controversies, Follow-up surveillance after wide excision for melanoma, Margins of excision – special situations

Actinic Keratosis: Novel Treatments

New insights into photodynamic therapy

(Note – in a recent meeting with a local Dermatologist I learned that the new and best tool for Derms is photodynamic therapy, but it is not covered in some provinces, namely Ontario)

Treatment of Basal Cell Carcinoma – Successes and Opportunities

Molecular landscape of basal cell carcinoma, Management of side effects of hedgehog inhibitors, Beyond hedgehog pathway inhibitors

Advances in Merkel Cell Carcinoma

Early studies of Merkel cell carcinoma: challenges and progress – Symposium, Doctor Helen Leonard

Immunotherapy for MCC: progress and problems – Symposium, Professor Paul Nghiem

This was a fascinating session to attend, as we got to witness first-hand two clinical research teams meeting each other in person for the first time. Dr. Leonard and Dr. Ngheim have been working together for years, and for the first time got to discuss their wok in person.  More on this here: OncLive SMR Coverage: Immunotherapy Infuses New Hope Into Merkel Cell Carcinoma Care

 

Surgical Oncology: Management of Stage III Metastatic Melanoma

Update of the results from the Multicentre Selective Lymphadenectomy Trial II, Natural history of patients with a positive sentinel node followed with active surveillance, Experience with neoadjuvant therapy for patients with advanced nodal metastases.

This session was personally interesting – and very moving – for me, as I WAS this brand of patient in 2014.  I have read the “new-found” controversy about the very surgery I had (Complete Lymphadenaectomy), and I have often wondered if I really had to have that terrible and invasive surgery to my right groin.  It was the best-known treatment for stage III melanoma at the time, remove the affected lymph nodes and then treat with interferon (in Canada).

I would have appreciated having the option to avoid complete lymph node dissection in favour of systemic therapy.  Systemic therapy (such as the ipilumumab I did end up receiving on a clinical trial in the adjuvant setting) offers alternative to invasive, costly, painful surgery.

I was riveted watching Dr. Coit present his evidence and very passionate argument on this topic.

This session was all about finding balance between medical and surgical oncology and individualized treatment of stage III melanoma, and it will stay with me for a very long time.

 

Friday and Saturday sessions included these:

Treatment of Advanced Squamous Cell Carcinoma

Risk classification of cutaneous SCC, Systemic therapy of advanced SCC, New approaches in the treatment of advanced SCC (immunotherapy)

Staging, Surgery and Targeted Therapies for Melanoma

The new AJCC melanoma classification, and Surgery for stage 4 melanoma patients: is it still worthwhile?

Fascinating information in these sessions – in fact, in January 2018 the new melanoma staging guidelines will come into effect.  Watch for SYSF to post a blog then and discuss this topic in more detail. It will also be included in our webinar series for 2018.  It is estimated that 6% of stage III melanoma patients will be up-staged due to the new guidelines.

Sunscreen: Bioavailability and Toxicity

Public health implications of sunscreen use, Sunscreen testing in Australia, Should nanoparticles be used in sunscreens? and, Toxicity of zinc oxide particles in sunscreens: myth or fact?

LOTS more to come from Save Your Skin Foundation on this topic as well.  We will bring light to the controversy over the use of sunscreen and how it is more healthful to use sunscreen to prevent skin cancer, than to not wear sunscreen and be at risk.

 

Another moving session was one on a topic consistantly discussed by Save Your Skin Foundation:

Patient Support and Survivorship

Melanoma: A clinician’s perspective, Symposium, Dr. Caroline Robert

Melanoma: a patient perspective, Symposium, Leisa Renwick

The survivorship conundrum, Symposium, Fiona Bennett

Living with melanoma – a patient plan, Symposium, Valerie Guild

Roundtable Discussion including our very own collaborator Dr. Reinhard Dummer

 

Closing sessions detailed the following:

Future Perspectives and Congress Highlights

Keynote Address: Unsolved questions in melanoma genesis, Genetic testing for skin cancer in 2017 and beyond, Highlights in melanoma from 2017.

It was an honour to see in person the likes of top melanoma researchers and clinicians such as Dr. Axel Hauschild,  Prof. Georgina Long from Society of Melanoma Research, and many other leading physicians in the field.

Some of the highlighted sessions were expanded upon with coverage from the below publication, please feel free to click this link for more articles: OncLive Coverage of SMR 2017

Following the closing sessions of the World Congress of Melanoma I worked with the Global Coalition for Melanoma Patient Advocacy for an additional day and a half, on initiatives that will be supportive of the melanoma patient population around in the world in 2018.  More to come on that!

For more information on anything you have read here, please feel free to contact natalie@saveyourskin.ca

And a generous thanks to our sponsors ~ Funding for my travel to and attendance at the WCM2017 was provided in part by the generous funders of Global Coalition for Melanoma Patient Advocacy, Melanoma Research Foundation, and Save Your Skin Foundation.  My deep gratitude for the opportunity to attend this event is echoed by my dedication to the patients who need the information I learned.
Thank you!

 

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Giving Tuesday is November 28, 2017

Happening the Tuesday right after Black Friday and Cyber Monday, two major days for commerce, GivingTuesday is a national day dedicated to giving. It’s a day when Canadian charities, businesses, and individuals come together for one simple purpose: to celebrate giving and give back.

At Save Your Skin Foundation, it is important that our donors know that every dollar they donate goes straight toward helping to meet the immediate needs of melanoma and non-melanoma skin cancer patients, as well as spreading awareness about this preventable disease.

Everything we do is led by the needs of the patient. The cancer landscape is anything but straightforward. Canada’s healthcare system is complex with many decision makers at federal and provincial levels that are responsible for the healthcare services we receive. We work to ensure the patient voice is heard and patients receive the best possible outcomes.

New treatments, lengthy drug approval processes, and differences in provincial healthcare funding mean patients sometimes fall through the cracks. We are there to support them and help them navigate their journey. We provide personalized support to patients to access the medical and financial assistance they need.

Help us continue to push forward the eradication of this deadly disease. Help us give Canadian melanoma and non-melanoma skin cancer patients the best chance of survival. Be part of something that matters.

DONATE

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Avelumab Survey for Merkel Cell Carcinoma Patients

(Note: blog post updated November 14, 2017)

Save Your Skin Foundation, in collaboration with Canadian Cancer Survivor Network, submitted the patient perspective on Avelumab (Bavencio) treatment for Merkel Cell Carcinoma, a rare form of skin cancer.  Thank you to all patients and caregivers touched by Merkel Cell Carcinoma, who shared their experience with this treatment.

The results of this survey were submitted in our patient evidence study to the pan-Canadian Oncology Drug Review (pCODR) on Oct. 24, 2017.

To read the submission, please click here.

 

For more information about Canadian Cancer Survivor Network, click here.

(image credit click here)

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Drug Pricing Policy Summit 2017

On November 15 & 16, 2017 was the 2nd annual Drug Pricing Policy Summit in Toronto, Ontario.  Varied patient groups joined the Canadian Cancer Survivor Network, Schizophrenia Society of Ontario, and Save Your Skin Foundation to discuss:  Drug Pricing Policy in Canada: Measuring Progress and Making Our Mark

This year’s Summit built on the inaugural 2016 Summit with updates from across the regulatory, public and private policy environments. In addition, the 2017 Summit presented different views on drug pricing policy in Canada, including perspectives on value-based healthcare with a focus on patient outcomes and putting the patient at the centre of the process. Panelists included leaders in the public and private payer environments, pharmaceutical industry and prescribers.

To read more about the background information, visit the Canadian Cancer Survivor Network website for the following link and more: Click here to view a description of bodies involved in drug pricing policy in Canada.

To learn more about the DPPS Working Groups or to inquire about getting involved in them, please email:  DPPSWorkingGroups@gmail.com

Updated December 19, 2017:

We are proud to share the reports from the 2017 Summit, in English and in French. Please click on images below to read the reports: 

              

Recordings of the sessions that occurred over the two days are also available via youTube, to view the collection please click here

 

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The following webinars were presented prior to this year’s Summit, detailing updates on the climate of drug pricing policy in Canada.

October 18, 2017, pan-Canadian Public Health Systems : The Basics
Presenters: Wayne Critchley, Louise Binder

Please click here to watch the recording of this webinar

This webinar will provide a broad conceptual blueprint of federal and provincial/territorial public health policy structures across Canada, describing the legal framework, government responsibility centres and their mandates for treatment access, with reference to specific opportunities for patient engagement. This is a primer for attendees attending the November 15-16, 2017 Drug Pricing Policy Summit and for others who would like to have a review of these systems for their interest.

November 1, 2017, Health Technology Assessment : What does value really mean for public drug plans?

Presenter: Matthew Brougham

Please click here to watch a recording of this webinar

This webinar will describe the process used by nine provinces and the territories to assess the value of a drug in determining whether public drugs plans should reimburse the drug through their plans. This is called a health technology assessment. It will describe the role and methodology of the Canadian Agency for Drugs and Technologies in Health in leading this assessment for both oncology and non-oncology drugs.

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SYSF Attends ESMO 2017 Congress

September 8-12, 2017, Kathy Barnard attended the ESMO 2017 Congress, European Society for Medical Oncology, in Madrid Spain.  In partnership with the European Association for Cancer Research, ESMO brought cancer researchers and clinicians together to enable collaboration and the exchange of ideas, from the laboratory to the bedside and back. This exciting partnership creates a unique cancer congress in Europe with huge scientific reach and the true potential to improve the lives of cancer patients.

With her, Kathy brought home the latest in news about melanoma and other skin cancers, as summarized in this report: ESMO 2017 Congress – Melanoma Highlights.

View or download the report HERE for details about the following:

Plenary Sessions
Adjuvant dabrafenib plus trametinib significantly lowers risk of death in stage III BRAF V600–mutated melanoma
BRIM8 data shows benefit with adjuvant vemurafenib in resected BRAFV600 positive melanoma
Nivolumab bests ipilimumab as adjuvant therapy in resected melanoma

Article from ESMO Daily Reporter
Practice-changing phase III data in melanoma patients cause excitement at a Presidential Symposium

Links to Press Releases
ESMO 2017 Press Release: Combination Targeted Adjuvant Therapy Doubles Relapse-free Survival in Stage III Melanoma
ESMO 2017 Press Release: Adjuvant Nivolumab Superior to Ipilimumab in Surgically Resected Stage III/IV Melanoma

Poster Submissions

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Melanoma Patient Survey for World Mental Health Day

A cancer diagnosis of any kind takes a toll on the mental health of those who receive it; feelings of anxiety, fear, and depression are common while adjusting to the uncertainty of a new life with cancer. World Mental Health day is October 10, and this year Save Your Skin Foundation is hoping to shed some light on the affects of a melanoma diagnosis on the mental health of patients and survivors.

By taking our survey anonymously, as either a patient or survivor, you will be providing us with insight regarding the need for emotional support among those diagnosed with melanoma, how these needs change in the transition period from patient to survivor, and how to provide the best support possible for anyone in this process.

We appreciate your taking this survey before September 25, and hope that you will share it with anyone you may know who has experienced a melanoma diagnosis. With your help, we hope to improve the ways we address mental health support for melanoma patients.  Stay tuned for the report we will compile from the survey! The survey is now closed, thank you for your feedback. 

Updated October 10, 2017: Please click here to read the report ~ SYSF Survey: Melanoma Patients and Mental Health, 2017

 

More information about World Mental Health Day can be found here.

For any questions or additional information, please feel free to contact us.

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#sunsafechallenge Winner Announcement!

Thank you to everyone who participated in our #sunsafechallenge instagram contest! Here are some of the awesome photos that were shared. Scroll to the bottom to see which post has been randomly selected to win a $100 Shoppers Drug Mart gift card!

      

And the winner is…

Congratulations, @ramonabietlot!

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One of our Favourite Articles from the ASCO Daily News

The American Society of Clinical Oncology (ASCO) 2017 meeting was so full of fascinating panels, abstracts, and articles, that we are only fully catching up now. We’d like to shine a spotlight on a particular article from the ASCO Daily News printed on Sunday, June 4th (on the ASCO website May 25, 2017): “Expert Editorial: Is There an Optimal Dose of Ipilimumab in Melanoma?” by Dr. Jason J. Luke, MD, FACP,  (Assistant Professor of medicine (Melanoma and Developmental Therapeutics Clinics), The University of Chicago).

Discussion of the immunotherapy treatment ipilumumab, or yervoy, has been a hot topic in melanoma discourse since ipilimumab was taken off of the market as a first-line treatment for advanced cases of melanoma. Prior to this, ipilimumab had regulatory approval for the treatment of advanced melanoma; however the trials of a 10 mg/kg dose were deemed to have inadequate safety follow-up, and therefore only the 3 mg/kg dose received approval. The most effective dose of ipilimumab was tested in the phase III CA 184-169 trial, which Dr. Luke outlines in his article. While this trial would suggest that there is no role for solitary ipilimumab in either the 3 mg/kg or 10 mg/kg dose as a first-line treatment in cases of advanced melanoma, Dr. Luke explores the ways in which ipilimumab can still be used in clinical practice and as an investigative tool for future combination therapies.  

The full text of the article can be read here. 

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Download the UV Canada App to Step Up your Sun Safety!

 

   With warm Summer weather approaching, the UV Canada application (available for iPhone and Android) should be a fixture on your phone! UV Canada is a free app jointly developed by the Save Your Skin Foundation, BC Cancer Agency, Environment Canada, and powered by MetaOptima, that allows you to check the current weather and UV Index level of any Canadian city.

The UV Index is a tool for understanding your risk of sun damage on any particular day. While the Summer season is the most high-risk for UV exposure, it is important to check the UV Index and protect yourself accordingly throughout the year, especially if you are participating in water or snow sports, as UV rays reflect strongly off of these surfaces.

The UV Index is a scale from 0-11+, with 0 indicating the least severe likelihood of UV damage. If the UV Index is between 0-2, minimal sun protection is required unless you are near surfaces that reflect UV rays, such as snow or water. Sunglasses are always recommended in bright conditions. A UV Index rating of 3-5 should be met by taking sun safety precautions, particularly during the peak UV hours of 11am-4pm. These may include wearing sunscreen, sunglasses, a hat, and seeking shade. These measures are especially recommended when the UV Index exceeds 6, which qualifies as high risk for UV damage.

The UV Canada app takes customization a step further with the ‘Time to Burn’ feature, which allows the user to estimate how long it would take their skin to burn in a given setting. This time period is assessed by combining the UV level on a particular day, the user’s skin type, the level of SPF they are wearing, and the environment they are in; environment options include desert, snow, grass, city, and water. This is both a useful tool for estimating the user’s need for sun protection and an educational tool for how long skin may take to burn in a given situation.

Below are two sample images from the UV Canada app, depicting two different UV situations. The light rain in Vancouver is accompanied by a UV rating of 3, so minimal risk of UV damage, while the warmer weather in Toronto has a UV rating of 7, necessitating sun safety precautions. The UV Canada app is constantly up to date with the weather and the UV Index throughout the day, making it easy to plan your sun safety strategy this summer. Stay safe!

  

Download the UV Canada app for iPhone or Android.

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Celebrating National Cancer Survivors Day with Patients Who Know: #CancerChanged

Diagnosed with advanced melanoma in August 2015, Lyall Woznesensky has learned that every minute of every day is precious, and he thanks his family and friends for their care and support through his cancer experience.

In time to celebrate National Cancer Survivors Day on Sunday, June 4, 2017, four Canadian patients living with advanced cancer are sharing their stories to help bring awareness to the hope for survivorship that is more accessible in this day and age, due to innovative new medical treatments.  Through documentary-style photo essays, a new campaign called #CancerChanged will bring to life these stories, to highlight hope and survivorship through the lens of Canadian award-winning photojournalists.

 

#CancerChanged gives an authentic glimpse into the lives of people living longer with advanced cancer to foster hope, understanding and peer-to-peer support.  This series of photographs, anecdotes, and video interviews will be shared in the coming days across social media channels, and through the networks of oncology patient organizations which are part of the collective called CONECTed.

“This is a time of change and a time of hope. Cancer patients have been dreaming about hope — and now hope is real.” said Kathy Barnard, Member of CONECTed steering committee and President and Founder of Save Your Skin Foundation, the patient advocacy group that has led the creation of CONECTed.  “New advances in cancer treatment have changed the outlook for many cancer patients. This extended phase is what we call survivorship and it poses new challenges such as how patients transition from a terminal diagnosis to a redefined ‘normal’ life embracing quality time and hope.”  See press release here

Lyall is open about his experience since learning that he has advanced skin cancer, “It’s all about trying to help others if I can in any small way,” he says, candidly, of his participation in #CancerChanged and bringing awareness to melanoma in general.  Recently Lyall was a guest panelist on a webinar hosted by Save Your Skin Foundation: Living Beyond Cancer.  Click here to watch the webinar.

To see more of Lyall’s impactful story, please see his photo essay below.  To see all of the #CancerChanged stories, please visit the #CancerChanged website here.  Click here for more information about CONECTEd, and to read about National Cancer Survivors day, click here.

Lyall was also interviewed for this article in the Winnipeg Sun: Former Bomber Finds Perspective in Cancer Fight

And here:  “The Woz” jumps for joy after tackling cancer, Saskatoon StarPheonix.

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