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The Save Your Skin Foundation Story – A Niece’s Perspective

You may have read the Save Your Skin Foundation’s story on the Foundation’s website here…but, as you probably know, everyone has their own story – and Founder and President, Kathleen Barnard’s niece has kindly shared one of her own. Thank you for your inspiring and beautiful story Taylor!

“In May of 2003, I wanted to be an astronaut; a pretty common dream for a child of ten. A less common aspect of my “studying” to be an astronaut was that it was all practical. On any given night you could find myself and Kathleen Barnard – my aunt, neighbour, and favourite person in the world – on her back deck, drinking hot chocolate while I pointed out constellations to her. Also in May of 2003, Kathleen was diagnosed with stage three malignant melanoma.

Melanoma is the most aggressive form of skin cancer, the result of a life spent outdoors. For Kath, this was often on a baseball diamond, either playing or coaching the team of myself or one of her two sons. The cancer manifested itself in a tumour on Kath’s arm, the size of which my family (myself excluded, as I was ten and oblivious) had been watching anxiously. Upon hearing the news, I can assume that Kath was as flawlessly optimistic as she has been every day since. I can confidently say that the only hope or happiness any of us had in that time was in watching Kath’s determination to beat the disease, and her strength has inspired all of us to be stronger in our own lives.

The first form of treatment Kath would undergo was Interferon, which involves a self-injection three nights a week for a year, accompanied by the side effects of hair and weight loss, and flu-like symptoms. Not a process for the faint of heart. Here, I should mention that I was only told about Kath’s illness after she had begun receiving treatments, when her physical changes were going to become too obvious to ignore; the fact that I had no idea that this was going on before she told me, demonstrates how strong she was, continuing to live her normal life by going to work and continuing to coach my softball team for as long as she could. After her year of treatment, we received the news that she was cancer free, and all of us, Kath especially, looked forward to resuming our normal lives.

A year later, in the May of 2005, one of Kath’s checkups revealed a tumour on her lung. Not only had the cancer returned, but had advanced to stage four: the most aggressive stage. This time, Kath underwent Chemotherapy. I was growing older and more terrified at the prospect of losing my aunt, and my life essentially consisted of crying in bed, then crying in my mom’s bed, then getting up and crying at school. Kath’s attitude, however, juxtaposed all of ours; she hosted family dinners and trips to Whistler, getting us all together as much as she could. She would always have some surprise up her sleeve, such as bringing a collection of children’s musical instruments to make a family band (I’m not joking), or Christmas crafts for us to do in Whistler. Even while there was talk of removing her entire lung as the tumour grew, and as her cancer metastasized to her kidney, liver, bones and ribs, she never lost her smile, or showed us how exhausted she must have been.

After extensive and desperate google searches, my cousin found a Doctor in Edmonton who was running a trial drug called Interleukin. The drug had showed positive results in 16% of trial subjects at that point, and no one had yet survived the entire treatment. The trial required Kath (and another member of our family-her husband, one of her sons, or my mom) to fly to Edmonton every second week to spend the full week in intensive care, receiving the drug though an IV every eight hours. While I never went with Kath (though I donated all my pocket money to her flights!), I gathered that the side effects of this treatment included nausea, weight gain, a rash, and low blood pressure. To help herself persevere through the treatment, Kath would write something on each bag to inspire her: things like the names of her family, friends, the girls on my softball team, future vacation destinations. She never complained; on her tongue instead were a million reasons her fight was worthwhile.

After four rounds of Interleukin, Kath was finally declared to be in remission. However, instead of trying to push the thought of cancer out of her mind, Kath and her amazing sister (and my mom) Rosemary decided to start the Save Your Skin Foundation. The fact that you are reading this anecdote right now proves that Kath’s enthusiasm paid off, and the foundation is successful. The Save Your Skin foundation seeks to promote the prevention of skin cancers, such as melanoma, via education and awareness. It also helps provide families struggling with the disease with personal and financial support in finding trial drugs. In short, the Foundation tries to prevent other families from going through what our own family did.

Unfortunately, the struggle was not over for Kath. In 2007, a CT scan showed the presence of a tumour in her small intestine. It was stage four malignant melanoma again, and Kath was immediately hospitalized and given an invasive surgery to relieve the pressure on her intestine. Her surgery and re-starting treatments did nothing but increase Kath’s drive to make sure the Save Your Skin Foundation was a success. She began putting together a Save Your Skin booth at local events, run by our family and friends, to get the Foundation out there as much as possible.

By February of 2008, Kath was flying back and forth between Edmonton and Vancouver again, but this time every twenty-one days and to receive the new trial immunotherapy Yervoy. She had been given four rounds of Yervoy when a new tumour was discovered in her kidney – an organ that she had to have removed in January 2009. After countless late night tea and creamsicle runs, it was over. That surgery, and January 2009, marks the date when Kath’s real remission began, and she has been cancer free ever since.

Since 2006, Kath has worked tirelessly to help the Save Your Skin Foundation grow, and I am pleased to report that it is now an international organization. Along the way, Kath and Save Your Skin have helped so many families who are lost upon receiving their diagnosis. A look at the ‘Survivor Stories’ and ‘Memory of our Friends’ section of the SYS website demonstrates how much amazing work Kath and Save Your Skin has done. I have truly never seen someone so passionate about their work, which is even more impressive when this person should be exhausted.

I am so honoured to be involved in such an important organization, so proud of my aunt, and so endlessly thankful that she’s still here with us. Though I no longer want to travel to space, I’m very grateful that Kath and I are still able to drink hot chocolate on the back deck and look at the stars.”

Thank you again for your story Taylor!

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I’m Living Proof Connects Melanoma Patients and Survivors

When Save Your Skin Founder Kathy Barnard was diagnosed with Metastatic Malignant Melanoma in 2003, the first thing she did was look to the internet for anything that would inspire optimism for her prognosis; hopeful news, survivors, or treatment options. She didn’t find much.

From this experience was created the “I’m Living Proof” initiative and website, intended to provide a wealth of information, resources, and support to those touched by cancer, while also connecting patients and their families to a community of survivors who have shared their stories. This initiative was borne from Kathy’s desire to ensure that those diagnosed with melanoma know that surviving melanoma is possible –“I’m Living Proof”.

Visitors to the site are encouraged to read participating patients’ stories, and they are given the option to connect with these patients via a secure form privately shared between the Save Your Skin Foundation team in collaboration with the person wishing to connect with other patients or survivors.

An interactive map serves as a method for patients and survivors to reach people across Canada and around the world.

 

On the map we use stars to represent survivors; we do this to inspire everyone already diagnosed, and those who will be diagnosed, to reach for the stars because there is hope for survival. Those of us surviving melanoma today are living proof of that. We also hold stars close to our heart as we remember those we’ve loved and lost to melanoma. These individuals are our stars in the sky, which is why Save Your Skin donates an actual star to the family of every melanoma patient we lose with a connection to the foundation.

To give you a bigger and better interactive map for which to connect with other patients, we have moved the former I’m Living Proof website to be housed right here under our very own SYSF site. Click HERE to see the map!

 

Please feel free to check out our map and click on the stars in locations across Canada to read the stories and see videos of fellow melanoma survivors.  If you feel you would like to speak with one of these folks, you can fill out a quick form and we will send your request to the person you wish to meet via email.

If you would like to share your story and join our support community via a star on the map or otherwise, you can click here to fill out a quick form to let us know you’d like to be in touch.

Tell us a little about yourself!  And what you think about this program.  We are here to help: Hand in hand we fight melanoma together. 

Welcome!

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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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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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