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#NotJustSkinCancer

by Natalie Richardson – The Impatient Patient

I was raised with a healthy respect for self-care and skin protection; I have a medium complexion so I “tanned well,” although I did get the odd sun burn and even a weekend of sunstroke at summer camp in my childhood. As an adult I took sun exposure seriously, but I still used tanning beds in the winter and I basked outdoors whenever possible in the summer. My draw to the warmth of the sun overpowered my consideration of the fact that I was putting myself at risk.

I was oblivious to the chance that I could be affected by the main contributor for skin cancer: long-term exposure to UV radiation from time in the sun. I was immortal. I wasn’t arrogant about it, I simply didn’t consider it might apply to me.

Little did I know I would be diagnosed with stage 3b (metastatic) nodular melanoma at the age of 37, in the middle of a busy career and raising twin daughters.

I had been feeling fine, rolling right along, and over the course of a few months a mole that I had had all my life changed colour and shape, and became itchy. Within a week of the mole being removed I was sobbing in the passenger seat of my own car on my way to the first of many consultations I would have with oncologists of all types.

Two years, four surgeries, and eight immunotherapy treatments later I am still recovering from the physical and emotional drain this disease has brought my family and myself. I spend all of my energy on my favourite parts of life, my kids, loved ones, friends… And, a passion for developing awareness of metastatic melanoma and its related issues.

My quest for more knowledge about melanoma led me to seek information and comfort from the internet, and thankfully I found Save Your Skin Foundation. Their positive words “Save the Skin You’re In!” drew me to their website and then to contact them directly via email, and then by phone. They were a beacon in the dark.

Save Your Skin Foundation wants to help people diagnosed with melanoma at any stage to feel they are not alone, and that there is hope for survival. “Together we are stronger,” is their sentiment, and with me it rings true as well. I have had the pleasure of working with them on a few small projects in Ontario, as I was immediately drawn by their warmth, friendly support and experience, and open kindness. I wanted to help them in return.

Last December I was honoured when they asked me if I wished to participate in the filming of a short video which was to be developed for use in a widespread social media campaign to be named #NotJustSkinCancer.

This melanoma awareness campaign is a collaboration of Save Your Skin Foundation and The Melanoma Network of Canada.

It is specifically a response to the complacency in social media toward sun exposure and skin cancer, as reflected in photos and messages using hashtags such as #SkinCancerHereICome and #SkinCancerDontCare, posted by social media users laughing about getting a sunburn or commenting on a fun day at the beach.

These grossly misinformed or blatantly abusive comments in social media do not amuse the families and friends of skin cancer survivors.

With this campaign we have a chance to discuss that and to inform others, perhaps help save youth from fates such as ours.

Several melanoma survivors gathered to share their stories on film. We were interviewed individually and we had time to interact together, and to react to a unique form of art with hand-made paper engraved with messages taken directly from social media users sites.

Melanoma Awareness Campaign_IG1

The photos taken of this artwork are self-explanatory, and the discussion we had when filming was heart-wrenching. For example, the piece most compelling for me was the comment “I NEED a tan… sorry Mom #SkinCancerDontCare”

I care! As a mother, I care. As a daughter, I care. And I can tell you my mother cares, as she is living my melanoma experience with me.

I left the session feeling the gravity of the emotion in our group about the given topic, but I also left feeling hope and a renewed sense of possibility for survival.

Survival not only for myself and my new friends, Susan, Caroline, and John, but also for those who may be reached by this video and may take new consideration for sun safety and realise that skin cancer is not a joke or something to be taken lightly.

Now this video and its message is coming to light, and we can create positive influence by spreading a new and far more effective hashtag: #NotJustSkinCancer It is a platform for discussing the fact that this disease is serious and life-altering; no sunburn is worth the trade-off.

It is not JUST skin cancer, it IS skin cancer.

See the awareness video for #NotJustSkinCancer

Natalie Richardson

www.impatientpatientmomma.blogspot.ca

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Let’s change the conversation together and shed some light on #melanoma. #NotJustSkinCancer

Melanoma Awareness Campaign_IG1

A skin cancer diagnosis can be scary. This is especially true for those affected by melanoma, the deadliest form of skin cancer, which claimed the lives of over 1,150 Canadians last year. However, while a new survey shows that the majority of Canadians say they understand the severity of skin cancer and fear a diagnosis, personal anecdotes and online dialogue suggest a different mindset. Images and posts about excessive tanning have become increasingly prevalent on social media, with hashtags such as #SkinCancerHereICome and #SkinCancerDontCare, illustrating that for some, skin cancer is viewed as a slight danger rather than a life-threatening reality.

It is important to understand that not all skin cancers are created equal. There are three different types of skin cancers with varying degrees of severity, and while most can be cured if found and treated early, those that spread beyond the surface of the skin can be complex and difficult to treat.

For this reason, Save Your Skin Foundation participated alongside the Melanoma Network of Canada to develop #NotJustSkinCancer, a video to help shed some light on the very real challenges and fears that come with a melanoma diagnosis, and provide hope to other Canadians facing a similar situation. The video features Canadian patients who have experienced a melanoma diagnosis firsthand and have realized that melanoma is not just skin cancer.

Click here to view the video: https://youtu.be/eZiBnB-B8-g

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unBeach Party!

Missed the 2016 unBeach Party? Catch up through the photos on our Facebook page here:

PARTY PHOTOS

UNBEACH STUDIO PHOTOS

And make sure you get your tickets for the 2018 Gala!

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Don’t miss the party of the year at the Vancouver Aquarium on Wednesday, May 18, 2016. #unBeach

Save Your Skin Foundation’s unBeach Party will raise funds for skin disease and skin cancers on Wednesday, May 18th at the Vancouver Aquarium. This first annual party for 300 guests takes place during Melanoma Awareness Month and will include themed cocktails and canapés, an exclusive silent auction, beach volleyball, entertainment, a surprise guest host – and all to the beat of our unBeach playlist (which will be available for download next month!).

The 2016 unBeach Party’s goal is to raise enough funds to roll out a critical awareness campaign on sun safety to schools throughout Canada and to support other important 2016 patient support initiatives. Funds raised at the 2016 unBeach Party will ensure better awareness, prevention and detection of skin disease and skin cancers within elementary schools across Canada.

Skin cancer is the most common type of cancer. It is also one of the most preventable. Over 80,000 cases of skin cancer are diagnosed in Canada each year, more than 5,000 of which are melanoma, the mostly deadly form of skin cancer. There are more new cases of skin cancer each year than the number of breast, prostate, lung and colon cancers COMBINED!

Skin cancer is caused by overexposure of the skin to UV radiation. The most common sources of UV radiation on the skin are the sun and artificial tanning beds. Though skin cancer is preventable and most often treatable, it remains the most common form of cancer.

For 2016 unBeach Party sponsorship inquiries, tickets or questions, please contact Karran at karran@saveyourskin.ca or call 1-800-460-5832.

Space is limited, get your tickets today!
Eventbrite - The unBeach Party

EVENT DETAILS

Don’t miss the party of the year! #unBeach

Date: May 18, 2016
Location: Vancouver Aquarium, 845 Avison Way
How to Get There: The Vancouver Aquarium is located in beautiful Stanley Park. Directions and parking details can be found here
Attire: Business casual beach attire

Tickets
Individual tickets are $100 and a group of 10 tickets is $1,000. Partial tax receipt issued after the event. To purchase tickets, please contact Karran Finlay at karran@saveyourskin.ca or call 800-460-5832 or purchase online here.

Event Details

6:30 pm Party Starts!
Silent Auction, Beach Volleyball, unBeach Playlist Beats, Sunscreen Sampling and more!
7:30 pm Special Guest Welcome
9:30 pm Raffle Draw

Silent Auction

Silent auction items to be listed soon!

Raffle

Raffle prizes to be announced soon!

Sponsorship

The Save Your Skin Foundation invites you to partner with us as a sponsor of The unBeach Party. We offer monetary sponsorship involvement at a variety of levels. If you would like to discuss a sponsorship opportunity, please contact:

Karran Finlay
Save Your Skin Foundation
Tel: 778-988-8194
Email: karran@saveyourskin.ca

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Key Takeaways from the Canadian Melanoma Conference

The Canadian Melanoma Conference (CMC) took place February 19-21, 2016 in Whistler, British Columbia and was a uniquely Canadian perspective on the landscape of Melanoma as it is happening in Canada now.  Attended by medical oncologists, dermatologists, pathologists, surgeons, radiologists, molecular biologists, industry partners and patient groups the Canadian Melanoma Conference is an opportunity to review and explore new therapies and to understand what’s coming next in the treatment of melanoma.

 Here are some key takeaways from that conference:

We understood at the Society for Melanoma Research Congress (SMR) last November in San Francisco that LDH levels play an important role in response rates in both the BRAF mutant positive population and the wildtype, and while no long term data on overall survival is available yet in the ipilimumab + nivolimumab combination therapy, early findings suggest that patients with both high and low LDH levels are having the same response to this combination therapy.  High LDH levels in patients, which correlate with aggressiveness of the tumour, demonstrated resistance to long-term response from targeted and immune therapies. Whereas patients with low disease burden are seeing great outcomes on therapy.  To view the SMR report go here.

There are distinct gender differences in melanoma, including different tumour types and different tumour sites (men are more likely to develop melanoma on the backs and trunks whereas women are more likely to develop melanoma on the legs.) An epidemiology study of melanoma by Dr. Thomas Salopek identified that globally, women are twice as likely to have melanoma between the ages of 15-50 (during menstrual years) which have researchers asking what role estrogen plays in the development of melanoma. There is also a spike in incidence in men after the age of 50, there is not a clear understanding of why this is happening.

Resident Dr. Paul Kuzel presented on the epidemiology of pediatric melanoma in Canada from 1992-2010.  Melanoma is the most common primary cutaneous malignancy diagnosed in patients under the age of 20.  Unlike adult melanoma, pediatric (those under the age of 18) melanoma rates remain stable.  Same distribution data between genders is seen in pediatric melanoma under the age of 15, after the age of 15 there are despairing differences in gender incidence of melanoma.

Melanoma patients are showing high rates of usage of mental health services in with use and rate of services depending on treatment administered. A study by Dr. Timothy Hanna showed a substantial burden on mental health services in advanced melanoma patients.

Sequencing was again a hot topic and data coming in the next year will provide treating clinicians more information on what to use and in what order when treating patients.

Standard of Care for the treatment of metastatic melanoma varies depending on what province you live in, with most patients having access to ipilimumab as a first line treatment, while doctors and patients in Québec are still on a regiment of dacarbazine (DTIC – chemotherapy). Dr. David Hogg expressed concern on the use of DTIC for the treatment of metastatic melanoma an felt that standard of care for the treatment of metastatic melanoma should be clinical trials (to find out more about clinical trials go here).

To see Kathy Barnard’s thoughts on why it’s important for patient groups to attend CMC go here 

To here my thoughts on CMC go here 

A full report on CMC will be available within the coming weeks.

Sabrina
Executive Director, SYSF

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We Need to Get Julie Home

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Kathy Barnard on why getting Julie home is important to her…

When I heard Julie’s story this past weekend, it hit me personally- in so many ways.  Firstly as a mom, and secondly as a wife but also because as a Melanoma patient, I know all too well what this family is experiencing.

Having failed to respond to any other treatment options available to me, and let’s be honest, there weren’t that many, and very few had ever had any sort of successful response rate, I found myself in Edmonton, Alberta, in 2006 undergoing treatment in a clinical trial. I was on round six when things went terribly wrong. I can still remember seeing the look of fear on my husband’s face as doctors and nurses were scrambling to get me stabilized.  I remember the conversation in the room of having to move me to another hospital with a critical care unit. And all that kept going through my mind is, I can’t be here – I need to be home in B.C. with my two boys, my family. Please get me home. I wanted to be able to click my heals together and be home.

Julie’s story is all to familiar, a reminder why I started this foundation 10 years ago, how lucky I was, how real this disease is. We need to get Julie home to her six year old son, Adam, to her family. She needs to be home.

Thank you to so many of you who have already given to the GoFundMe campaign to get her home. Julie is booked on a Medivac flight on the morning of March 2nd, 2016. She’s almost there Adam! Your mom is almost home.

Please help us to keep spreading the word and donate, if you can: https://www.gofundme.com/juliecrawford

Update as of Tuesday, March 1st at 5:30pm PST: So many of you have supported and reached out and let us know you are thinking of Julie and her family and following her story. The community has been incredible. We’ll post updates and related news articles here so that the SYSF community can stay updated.

CBC: Spruce Grove mom got her wish to die near family, Final wish was to be transported home to be with her son on his seventh birthday.

CBC: Gofundme campaign helps Alberta mother come home to die – Julie Crawford to be medevaced home today to celebrate son’s seventh birthday

Huffpost Alberta: Julie Crawford’s Dying Wish Granted As She Flies Home For Son’s 7th Birthday

Edmonton Journal: Dying Edmonton-area woman flown home on medical flight funded by friends and strangers

CTV Edmonton News: Getting Julie home to her son on his birthday

Calgary Metro News: GoFundMe page raises cash to fly dying Alberta woman home

CHQR AM770: Fundraiser to medivac terminally ill mother home for final wish

CKNW: Crowd funding initiative launched for Edmonton woman with inoperable cancer

AM730: Crowd funding initiative launched for Edmonton woman with inoperable cancer

Thank you,

Kathy Barnard

Founder & President, Save Your Skin Foundation

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