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Shoutout to Slyde Handboards for Their Generosity!

Blog re-posted from the Slyde Handboard Website, October 22 2016

SLYDE AUTOGRAPHED MARK CUNNINGHAM BOARD RAISES $280 FOR SKIN CANCER AWARENESS

SLYDE HANDBOARDS BELIEVES IN DOING GREAT THINGS, AND GIVING BACK IN BIG WAYS.

Carlos our team rider from Canada recently completed a 365 day watermen challenge. In which he wave rode every day for 365 day without fail.

The challenge in effort to raise awareness and education for skin cancer.  The most common type of cancer, and one dear to Carlos’s heart as his father Marcel passed away from the disease.

Slyde alongside Raw Elements USA honored Carlos’s epic effort and his father by auctioning off an autographed Mark Cunningham Handboard & natural sunscreen package, with all proceeds going to Save Your Skin Foundation of Canada.

The auction saw a ton of action with the winning bid of $280 going to South African native Clint Buckham.

Thank you Clint for your generous donation, and everyone who participated.

REMEMBER TO SAVE YOUR SKIN AND  THOSE AROUND YOU, APPLY YOUR SUNSCREEN AND STAY PROTECTED BEACH LOVING FRIENDS.

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Why Save Your Skin Foundation?

Written by Natalie Richardson

 

This has been the most exciting few weeks I have had since I was diagnosed with metastatic melanoma. I feel an optimism unusual for my character since finding a potentially deadly mole on my hip in April 2014, when my world came crashing down with fear and worry. After surgeries and immunotherapy treatments, my body and my mind were left confused and full of dread.

I remember the exact moment I embarked on the path that would eventually lead me back into a productive life, with hope and determination as my new leads. Though I did not know it at the time, my discovery of Save Your Skin Foundation was a saving grace.

Depressed by internet searches about this disease, I relied solely on the word of my oncologists to guide decision-making in my care. Thankfully, I was fortunate to have an excellent medical team with a finger on the pulse of current treatments and clinical trials. My family and I did seek second – and third – opinions at Centres in Ontario, and I felt as secure as I could possibly be, choosing the course of my treatments with their guidance, via clinical trial.

By randomized-draw chance I received the treatment that I may always credit with saving my life, and I am grateful for that. But to this day I ponder what may have happened had I been on the other side of that trial draw. It bothers me, keeps that fear lingering. Not only fear for myself, but for others who may face the same risks that I have, and may not receive the same care. What if someday, my children were to face this diagnosis and did not have access to treatment?

In researching this question, I came upon a website with a warm first impression and a vastly informative set of links and options. I clicked and read and explored, not once feeling intimidated. I had to know more… the moment was right, and I had stumbled upon the right place: Save Your Skin Foundation.

I called the number, immediately reaching Kathy Barnard, melanoma Survivor, and Founder of this Foundation. Her distinctive voice put me at ease, and we talked about my situation and how fearful and alone I felt. She told me of her experiences with treatments, and I shared mine. She knew my medical oncologist as well as many others across the country, and she told me about new therapies on their way toward fighting melanoma skin cancer.

She determinedly said “You’re going to be okay.” And I believed her. I felt she might be right. She had run the gamut and come out the other side, and she understood what I was talking about.

My loving friends and family had been telling me that I would be all right, but when Kathy said it, it was different. My loved ones wanted it to be all right, but Kathy knew that there was actually a possibility that it WOULD be.

I have since learned that it is this determination and experience that has led Kathy and her family to build an educated team, in the form of a Foundation, to help others in this way. Many patients are touched by the support of this group; many lives are saved.

Emotionally and physically, Save Your Skin Foundation is there for any and every Canadian touched by skin cancer, whether it be a pre-cancerous lesion or a diagnosis of advanced metastasis. They share their experience, they research every medical detail, they work every day to help those in need of support in a skin cancer battle.

Since that day I first spoke with Kathy, I felt safe. I was comfortable looking around her website, watching the webinars and reading the notes carefully assembled. It remains a safe and reliable source of information about every stage of skin cancer.

Having gravitated to it for a year and a half, I have been dedicated to helping Save Your Skin save MY skin! And that of others. We network, collaborate, and identify with each other in a way that perhaps only those in our shoes can understand. It is a community of support available to those who need it.

It is at their invitation that I have had the inspiration to share my story so openly, encouraged in campaigns such as #NotJustSkinCancer and the Melanoma Through My Lens Reflection
Project. They have been a huge part of my rehabilitation, right down to the gentle reminders that I CAN still do the things I feared I had lost after diagnosis.

I feel great responsibility in being able to represent Save Your Skin in these kinds of projects, and at the same time I feel equal duty to represent fellow melanoma warriors, patients, families, and friends travelling their own skin cancer journey.

It’s the least I can do, in return for this gift of support and hope that I have been given. Thank you, Save Your Skin Foundation.

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A Thank You from Melanoma Caregiver

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Written by Connie, wife and caregiver to her husband and melanoma patient, Ted.

A year ago my husband was diagnosed with Stage 4 melanoma with metastases to the lungs.  Our world suddenly and drastically changed where fear and worry took over our days.  In a whirlwind of appointments and consultations it became apparent that there would be numerous tests, scans, followup appointments and overnight trips that would take us to a specialized oncologist.  Of course there was the chemotherapy as well.  Once things became somewhat routine like, if I may be brave to say so, of just becoming a new norm the other part of life began to take over.  Suddenly, I became the main income earner for my family along with caregiver alongside being a mother.  How were we going to get through this?  Or, how was I going to get use to looking at my husband daily crying inside with the thought of losing him to this dreadful disease?  Living in a very rural and remote area I had no options for caregiver support, I had no family support and so I stood alone in my rollercoaster emotions trying to be strong and positive for my husband.  Then one day I came across the Save Your Skin Foundation and met 2 incredible people, Karran Finlay and Kathy Barnard.  These 2 people reached out to me from a distance, listened to me and in doing so I began to feel hope and renewed strength.  I suddenly felt that maybe I wasn’t alone and I continue now to feel this way as I know in my heart that they are there and will continue to be so as the journey of fighting cancer continues with my husband.

Right now there is not a lot I can do to give back to this incredible Foundation and these 2 beautiful, compassionate women, but I can write this to say THANK YOU!   To say that without them, I as a caregiver would be totally lost and in despair.  To say THANK YOU for not ignoring me, for listening everytime I email or phone, for never being too busy to open your hearts!  THANK YOU!

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Biosim•Exchange: A Resource for Staying Updated about Biosimilars!

While not yet a frequently heard term in melanoma treatment, biologic medications are making their way from arthritis to other chronic illnesses, including cancers. Biologics are medications that are created from living organisms, such as bacteria or yeast, as opposed to chemicals. The second iterations of these products are biosimilars; the closest imitations to the first products possible, though the chemical compositions of the first cannot be exactly duplicated.

Like other medications, biosimilars in Canada require chemical equivalence trials before being put on the market. These trials include a comparison of the mechanism of action, rate of administration, dosage form, and strength of the original medication and the biosimilar. This is to ensure that there will be no difference in the safety or efficacy between the two medications.

As biosimilars are most often developed for the treatment of arthritis, the Arthritis Consumer Experts (ACE) are leaders in the biosimilar field. Since 2009, the ACE has been working with advocacy groups, patients, healthcare, and government stakeholders to support the development of a medication approval and reimbursement access regime. Recently, ACE launched the Biosim•Exchange website. Biosim•Exchange is an information hub for consumers to learn about biosimilars, stay up-to-date on biosimilar news, and background analysis of biosimilars currently on the market. Having this information helps patients participate in forming their treatment plan, and encourages collaboration between patients and their medical team.

Biosimilars are a rapidly developing option for the treatment of chronic illnesses. To stay on top of advancements in this field, check out Biosim•Exchange!

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Save Your Skin Weekly Flashback! [September 12-18]

Welcome to the Save Your Skin Foundation media flashback- your weekly guide to the melanoma landscape, and the activities of the Save Your Skin Foundation! This week, we’re excited to announce our new educational video series, which we hope will answer your questions about a variety of skin cancer issues! There are already some videos up there, so be sure to check it out.

We’re also busy getting prepared for our upcoming public forum on October 6 in Nanaimo, B.C., hosted by Dermatologist Gabrielle Weichert, and melanoma survivors Nigel Deacon and Meloney Edgehill! More information can be found on the poster below.

PatientForumPoster_Oct2016

 

Here are some links we shared with you this week:

-This piece on immunotherapy in the Ottawa Citizen

-A link to the Canadian Daily UV Index Forecast

-A summary of our roundtable discussion about whether early detection and prevention in primary care can benefit patient outcomes

-This article on Entertainment Tonight Canada about Khloe Kardashian’s skin cancer scare!

-This piece on My Toba warning about the particular skin cancer risks for those over 50 years of age

-This article in the Ottawa Citizen about the hunt for immunotherapy funding

-And this lovely photo of two Save Your Skin Team members, Rose and Marion, who recently raced in Oregon wearing SYSF jerseys! Way to go, team!

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Thank you for reading, and stay sun safe out there!

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Merck and Pfizer Collaborate on Potential Merkel Cell Carcinoma Treatment

Merkel cell carcinoma (MCC) is a rare form of skin cancer, making up fewer than 1% of all non-melanoma skin cancers (Canadian Cancer Society, “Merkel Cell Carcinoma”). It manifests as malignant cells that form in the upper layer of skin, near the nerve endings that sense touch (Merck-Pfizer Alliance, “Merkel Cell Carcinoma Fact Sheet”). Merkel cell carcinoma often appears on sun-exposed areas of the skin, such as the legs, arms, neck, and head, as a blue or red lump on the skin. It most frequently occurs in fair-skinned males over 50 years of age (Merck-Pfizer Alliance).

Merkel cell carcinoma has a higher mortality rate than melanoma, with a mortality rate of 33% within five years of diagnosis (all stages) (Merck-Pfizer Alliance). Due to low awareness of merkel cell carcinoma, late diagnosis often results in the disease having reached stage III or IV(Merck-Pfizer Alliance).

Current treatment options for merkel cell carcinoma include chemotherapy, radiotherapy and surgery. These treatments are generally ineffective for advanced stage merkel cell carcinoma, resulting in a mortality rate of roughly 80% for stage IV metastatic merkel cell carcinoma patients (Merck-Pfizer Alliance). There is a gap in treatments for merkel cell carcinoma, and a need for more research and the staging of clinical trials to fill that gap.

Fortunately, at least one new treatment is in the works. JAVELIN merkel 200 is the title of an ongoing clinical study investigating the effects of avelumab, a treatment jointly manufactured by pharmaceutical developers Merck (Germany) and Pfizer (USA), on pre-treated patients with merkel cell carcinoma. The treatment inhibits PD-L1 interactions (Pharmaceutical Technology, “Merck and Pfizer’s Avelumab gets Breakthrough Status for Merkel Cell Carcinoma”), acting as an immune checkpoint inhibitor. The trial produced the largest set of data, in this patient population, of any anti-PD-L1/PD-1 (Pfizer, “ASCO 2016: Pivotal Avelumab Study Shows Positive Results in Metastatic Merkel Cell Carcinoma”). The results reported at the 52nd annual American Society of Clinical Oncology (ASCO) in Chicago this past June were promising: of 88 patients, 28 (31.8%) demonstrated an objective response rate during the Phase II study of avelumab (Pfizer). Of those that responded, 8 (9.1%) achieved complete responses, with 20 (22.7%) achieving partial responses (Pfizer). Of the entire trial, 62 (70.5%) patients experienced treatment related adverse effects (AEs), with the most common being fatigue (23.9% of patients) and infusion-related reactions (17%), with four patients (4.5%) experiencing grade 3 side effects and zero with grade 4 side effects (Pfizer). The ages of the trial participants ranged from 33-88 years old, and every participant had been pre-treated with chemotherapy (Pfizer). The patients received 10mg/kg of treatment intravenously every two weeks (Pfizer).

While avelumab is still in the trial stage, if it is approved, it will be the first approved treatment for Merkel Cell Carcinoma. Current information about the status of the trial can be found on the American clinical trial database or Pfizer’s website.

 
Works Cited:

Canadian Cancer Society, “Merkel Cell Carcinoma”.

Merck-Pfizer Alliance, “Merkel Cell Carcinoma Fact Sheet”.

Pfizer, “ASCO 2016: Pivotal Avelumab Study Shows Positive Results in Metastatic Merkel Cell Carcinoma”.

Pharmaceutical Technology, “Merck and Pfizer’s Avelumab gets Breakthrough Status for Merkel Cell Carcinoma”.

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Save Your Skin Weekly Flashback! [Sept 5-11]

Welcome to the Save Your Skin Foundation media flashback- your weekly guide to the melanoma landscape, and the activities of the Save Your Skin Foundation! This week, we are excited to point you towards the most recent publication Save Your Skin has been involved in, CONSENSUS REPORT: Recognizing non-melanoma skin cancer, including actinic keratosis, as an occupational disease- A Call to Action,” in the Journal of the European Academy of Dermatology and Venereology! We’d also like to remind you of our next event, our “Mountain or Mole Hill?” skin cancer forum in Nanaimo, BC, on October 6th! Details can be found in the banner below.

 

PatientForumPoster_Oct2016

 

Here are some links we shared with you this week:

-A reminder to check out our “Melanoma Through my Lens” project, if you haven’t already!

This blog post by Doris Day, M.D., about the importance of sunscreens and choosing the right one for you

This Centers for Disease Control and Prevention guide to sun safety for children, which includes resources about sun safety for students

This article from the Canadian Cancer Society’s Research Information Outreach Team about the emergence of oncolytic virus therapy

This story in The Globe and Mail about Dr. Brian Day’s fight to lift the ban on paid-for private health care for “medically necessary” care

 

Thanks for reading, and be sure to stay sun safe even when the weather is cooling off!

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Event: The Third Annual Bill Fox Memorial Golf Tournament

Looking to golf for a good cause? If you’re in the Granton, Ontario area, check out the third annual Bill Fox Junior Memorial Golf Tournament! Held on September 10 at the Fox Golf Club, the event will honour late CPGA professional golfer Bill Fox, who passed away at fifty years old from melanoma. Since 2014, the Save Your Skin Foundation has collaborated with the tournament to ensure sun safety on the day, and promote melanoma and sun safety awareness. The tournament will consist of a shotgun scramble with teams of four, and a passport for purchase that allows participants to take part in the longest drive, closest to the pin, and other contests! The winning team will have their names engraved on the Bill Fox memorial trophy, which remains at The Fox year round. Registration fees include the cart, range balls, a hot dog lunch (with a drink ticket!), and a ticket to the steak dinner and silent auction that will round off the evening! Tickets for the dinner can be purchased individually without participation in the tournament. If you’re a golfer in the area, come out for a good cause- and don’t forget your sunscreen!

 

*Vegetarian option for dinner available upon request.

All skill levels are welcome.

Registration Deadline: September 3rd.

Registration is $115 per person.

Register at: 519-225-2757 or billfoxgolftournament@gmail.com

Registration deadline is August 10.

Tickets for dinner only available for $35.

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Save Your Skin Weekly Flashback! [August 28th-September 4th]

Welcome to the Save Your Skin Foundation media flashback- your weekly guide to the melanoma landscape, and the activities of the Save Your Skin Foundation! First off, we’d like to thank everyone who has tuned in to our last webinars, a post-ASCO review with Dr. Omid Hamid, and “Choosing the Right Sunscreen” with Renée-Claude Lachapelle! If you are interested in learning more about melanoma and are located on Vancouver Island, we’d love to see you at the forum we are running on October 6th in Nanaimo, B.C., with our friends at La Roche-Posay and Leo Pharma! It will be hosted by Dermatologist Dr. Gabriele Weichert, and melanoma survivors Nigel Deacon and Meloney Edghill! More details can be found in the banner below.

 

PatientForumPoster_Oct2016

 

Here are some links we shared with you this week:

-These amazing New York Times articles covering the emergence of immunotherapy and the story of one man’s intensive treatments

This piece in BC Cancer Foundation’s Partners in Discovery about NeTracer, a radionuclide therapy program that is set to begin in BC within the year

This video on Oncology Tube in which Dr. Omid Hamid discusses the future of immunotherapy and new clinical trials

This piece in News Medical about iris melanoma- Always wear sunglasses!

These sun safety tips from Doctors Nova Scotia

This piece on Dr. Yvette Lu’s blog debunking sun safety myths

This American Academy of Dermatology guide to skin self exams

These sun safety tips from Sunburn Alert

This Express article about the dangers of burning while driving

This Aim at Melanoma Foundation guide to a skin self-exam

 

Thanks for reading! Remember to keep checking the UV index to see if you should be wearing sunscreen, even as the weather turns more grey!

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Save Your Skin Weekly Flashback! [August 21st-27th]

Welcome to the Save Your Skin Foundation media flashback- your weekly guide to the melanoma landscape, and the activities of the Save Your Skin Foundation! This week, we’re excited to announce a public forum we are hosting in Nanaimo, B.C. with our friends at La Roche-Posay and Leo Pharma on October 6th! It will be hosted by Dermatologist Dr. Gabriele Weichert, and melanoma survivors Nigel Deacon and Meloney Edghill! More details can be found here and on the banner below. 

Also, if you haven’t registered yet, don’t forget about our Post-ASCO webinar tomorrow (Friday, August 26th!) with Dr. Omid Hamid, Director of the Melanoma Center at The Angeles Clinic and Research Institute. You can register here.

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Here are some links we shared with you this week:

The updated Nova Scotia Pharmacare Formulary, which will include Tafinlar and Mekinist as of September 1st

These Centers for Disease Control and Prevention sun safety tips

This article from the Skin Cancer Foundation about the increased rates of melanoma and other skin cancer in organ transplant recipients, and how to lessen your risk

This blog post on Mom’s Makeup Stash which might help you decide on a sunscreen brand

This piece on Vitamin Daily about the new UV patch from La Roche-Posay. Super cool!

This article on Science Daily about the correlation between eye colour mutation and skin cancer risk

Sunburn Map, which provides an up-to-date UV index map

This article on Medical Xpress about a tanning bed survey, which reported that while the majority of women asked support banning tanning beds for users under 18, few support a complete ban

This Centers for Disease Control and Prevention infographic about keeping school sun safe

This Canadian Cancer Society PSA about sun safety, and stopping cancer before it starts

This Targeted Oncology article about the future of immunotherapy and oncolytic viruses in cancer treatments

This list from Prevention of six surprising risk factors for skin cancer

This Vancouver Sun article about the shortage of dermatologists in British Columbia

This Daily Beast article about the potential discovery of chemical substances that can halt the metastasization of melanoma from researchers at Tel Aviv University, two other Israeli medical centres, and the German Cancer Research Center

This story in The Daily Telegraph about melanoma arising from a freckle

 

Thanks for reading, and stay sun safe out there!

 

PatientForumPoster_Oct2016

 

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