melanoma survivor

Introducing: Ocumel Canada

For the past year, Save Your Skin Foundation has been working with ocular melanoma (OM) survivor and advocate Nigel Deacon, to improve OM patient care across the country. Together we created a survey and resulting report in order to gain insight into the Canadian OM patient journey, and we have connected with innovative OM treatment researchers as well as explored testing options in Canada for ocular melanoma, also known as uveal melanoma. Additionally, we have partnered with OM patient support groups around the world, such as Cure OM (an initiative of the Melanoma Research Foundation, United States), and Ocumel Ireland and Ocumel UK.

We are inspired by the work being done by these groups, and by the feedback we receive from patients who need better support in their diagnoses of primary and/or metastatic ocular melanoma, to work toward better and more standardized care in all provinces in Canada. We have identified gaps in OM patient care which can vary from centre to centre, and we recognize the need to advocate for patients to receive treatment for their disease, especially when it is metastatic.

In order to continue this work and raise awareness for this rare disease and the patients who need support to handle it, we have created a dedicated initiative called Ocumel Canada, which will serve as our platform for increasing education and community around the topic.

Ocumel Canada strives to do the following:

Advocate for early detection of ocular melanoma
Enable access to early treatment of primary ocular melanoma
Work towards a consistent approach to treatment of metastatic ocular melanoma
Support patients who have been diagnosed with primary or metastatic ocular melanoma
Build a network of support for patients and caregivers

Ocumel Canada will work with health care providers and HTA decision-makers across Canada to improve ocular melanoma patient outcomes. We applaud the work being done at the two busiest centres for referrals, and we wish to help extend treatment options to patients in remote areas and to provinces who do not currently participate in the same practices available to OM patients in areas such as Toronto, Ontario. Advocacy for increased patient access to clinical trials, even if in other countries, is also an aim for Ocumel Canada.

Today we begin with a new hope for Canadians diagnosed with ocular melanoma.

Click here to read the press release: Launch of OCUMEL CANADA Offers New Hope for Canadians Diagnosed with Rare Ocular Melanoma

Stay tuned for updates on our progress! And tune in Friday February 15, 2019 to our webinar Ocular Melanoma: Innovative Treatments and Beyond, with Dr. Butler of Princess Margaret Cancer Centre, and Dr. Hamid from The Angeles Clinic and Research Institute, in Los Angeles, California, U.S. This webinar will provide an update on the landscape of metastatic ocular melanoma treatment in Canada and the United States. Dr. Hamid and Dr. Butler will share their knowledge of current practices and care pathways, identifying the most pressing needs for patients. They will also discuss innovative treatment options such as IMCgp100, as well as clinical trials available to Canadian patients with ocular or uveal melanoma. Nigel Deacon will share his experience with this rare cancer; Kathy Barnard will facilitate the discussion.

For more information about ocular melanoma and the Ocumel Canada initiative, please feel free to explore the information we have put together for our website at www.ocumelcanada.ca , email ocumelcanada@saveyourskin.ca, or call us at 1-800-460-5832.

We have created the following pages to provide up-to-date links and resources:

Ocumel Canada – About Ocular Melanoma

Ocumel Canada – Helpful Links

Ocumel Canada – Resources and Support

Ocumel Canada – 2018/2019 Strategic Plan

https://www.instagram.com/p/BsqaD2xgyf6/

SYSF Teams up with La Roche-Posay Canada at OneWalk Toronto 2018

Last weekend I went for a 15 kilometre walk— as in, 15 kilometres all at once. Two short years ago I could not have done that, being in recovery from surgeries and treatment for advanced melanoma, I was not physically or psychologically capable of such a feat. This year however, I was grateful to walk 15 kilometres (in 3.25 hours!) alongside a team dedicated to raising funds for melanoma research at Princess Margaret Cancer Centre in Toronto.

I was motivated to join this team this past spring, when our new sponsor La Roche-Posay Canada told me they were doing the OneWalk Toronto 2018, and suggested perhaps I could join them as a representative of melanoma survivors and Save Your Skin Foundation (SYSF). I was thrilled but also anxious about this idea – could I really do it?

We each had a fund-raising goal and friendly instructions to meet at Nathan Phillips Square in downtown Toronto on Saturday September 8, 2018 at 7:30am. Being as I was a guest on the team I didn’t have to do any of the heavy lifting, but I was there early enough to witness the hard-working team at La Roche-Posay (LRP) setting up, distributing sunscreen samples, and greeting walkers with encouraging smiles and high-fives.

I was thrilled to meet some of the folks I had been speaking or emailing with for months – it was so great to put faces with names. I had done events with LRP in the past, but this was a large local project in which SYSF and I both feel quite invested.

La Roche-Posay, with their sunscreen line, is a huge proponent of melanoma prevention, and the partnership we were demonstrating at the OneWalk was that of awareness and education. LRP is also a sponsor of the OneWalk Toronto event and were obviously enthusiastic about being able to bring awareness to sun safety and skin cancer prevention to all participants. They had a shade tent and sunscreen samples and tester bar, as well as their new “My UV Patch.”

My initiation into the team that morning was the presentation of my name tag and lanyard for the walk. I did not expect the rush of emotion when my new friend put my lanyard on me – it was a special coloured one, reserved for the cancer survivors of the crowd.

Not having participated in the OneWalk before, I was unexpectedly dazzled by the supportive community and encouragement to cancer patients and survivors at the event. Everyone everywhere was respectful of and very loving to those of us with the rainbow lanyards.

At one point during the opening ceremonies, the MC asked everyone with a rainbow lanyard to remain standing, and everyone else to kneel on one knee. Our team happened to be at the front near the stage, so when this happened I was glad I had my back to most of the hundreds of people in the square all around me – my tears were flowing at this point – I was so overwhelmed I almost got down on one knee too. I was incredibly humbled by the honour I felt by this moment of silence in cancer survivors’ memory and support.

Team LRP raised over $20 000 for Princess Margaret Cancer Centre, a decent portion of the total raised $4.7 million by 3200 walkers from all over Canada. I could clearly see why the event is so successful; it is very well organized, and cancer patient care is the obvious topic at hand. Princess Margaret Cancer Centre staff and supporters made speeches in the opening ceremonies, and a couple of the Research Team Leads also got up on stage to address the crowd. Overall, it was a fabulous representation of this centre, which happens to be one of the top five in the world for cancer care research and innovation.

Even one of our Medical Oncologist friends and SYSF Medical Advisory Board members from PMH was present – he had done the Friday evening NightWalk – but he came after lunch Saturday to meet with the La Roche-Posay team. I am thrilled to report I got a hug from him; I couldn’t stop more tears when he thanked me for participating in the event. It’s not very often I get to thank him in person for all that the HE does for melanoma patients like me.

I’d like to extend huge thanks to my new friends from Team La Roche-Posay Canada, not only for their warm welcome and hard work at OneWalk Toronto 2018, but also for their dedication to skin cancer prevention and awareness all year-round. I look forward to helping facilitate the initiatives Save Your Skin Foundation and La Roche-Posay will be working on together – stay tuned for updates!

Team LRP with Toronto Mayor John Tory

Team LRP at the Finish!

By Natalie Richardson,

Metastatic melanoma survivor and advocate, Managing Director, Save Your Skin Foundation

Surviving Melanoma – Our New Video

Click here to watch our new patient-led awareness video: Surviving Melanoma

Launched last week at our Giving Hope Gala in Toronto, this video portrays several melanoma survivor stories and their experiences within the community of support at Save Your Skin Foundation.

This film would not have been possible without the generous participation of a handful of melanoma patients and survivors, and for that we cannot thank them enough.

Click here to view on YouTube

Financial assistance and support that you might find useful

Updates on our Support of Mental Wellness After Melanoma Diagnosis

In the summer of 2017, Save Your Skin Foundation conducted a patient survey seeking insight on the emotional and psychological impact of a melanoma diagnosis, in order to expand on our personal experiences and to learn how we may be able to help improve support systems for patients and survivors across Canada.

Since the release of the report from that survey (click here to read the report), we have developed a poster for display during our upcoming attendance at the 12th Annual Canadian Melanoma Conference (February 2018). This poster is titled:

THE AFFECTS OF MELANOMA ON THE MENTAL WELLNESS OF PATIENTS, AND THE LANDSCAPE OF MENTAL HEALTH SUPPORT IN THE CANADIAN MELANOMA COMMUNITY

We welcome the discussions that the information in this poster will inspire, and we will continue to bring voice to the challenges that are faced by those who are touched by melanoma skin cancer.

To read the poster we have created from the survey results, please click on the image below to view it in PDF format, in which you will be able to zoom in on the small text and graphs.

The survey was conducted in English using the SurveyMonkey online platform. It was also made available in French for Quebec residents. The English survey was open from August 21, 2017 to September 25, 2017; the French survey was open from August 28, 2017 to September 25, 2017. There were 28 participants in the English survey, and 19 in the French survey. French to English translations were largely performed by our in-house translator, Danika Garneau. The English and French results are combined for the purpose of this project. The poster will provide an overview of the survey results. For any feedback or questions, please contact natalie@saveyourskin.ca.

To view the complete survey responses, please click here:
Save Your Skin Foundation Mental Health Survey 2017 – English
Sondage sur la Santé Mentale de la Fondation Sauve Ta Peau 2017 – en Francais

Stay tuned for updates on our work in mental wellness and self-care after cancer diagnosis.

Opening Our Eyes To Ocular Melanoma

Guest blog by our friend: Nigel Deacon, ocular melanoma survivor and patient advocate.

Ocular melanoma

Welcome to the Save Your Skin Foundation website. You are probably here because you or a loved one have been diagnosed with ocular melanoma. It is a big shock to get this news and you are doing well by looking for reliable, sensible, understandable information and guidance.

If you have not yet had treatment, your timing is excellent. Having good information beforehand will be very helpful to you as you discuss the disease, and your options, with your ocular oncologist.

You probably know already that this is a very rare cancer. Fewer than two hundred Canadians per year are diagnosed. It is really important to know as much as possible about how your cancer has presented. How large is the tumour in your eye? Where exactly is it? Both of these pieces of information can make a big difference to your plan. Ask for the reports that your ocular oncologist has, and keep them carefully in a file for future reference. The language is foreign at first but you will quickly learn to be proficient.

Perhaps a good thing to know, as you start the journey, is that half of the people treated for a primary tumour in the eye are then cancer free and that cancer will not spread any further. You will need continuing care of your eye by your ocular oncologist, to preserve as much vision as possible, for health, comfort, or aesthetic reasons, and to be vigilant in case the cancer returns.

(If it turns out that your cancer returns and spreads, please read the section below dedicated to providing information about that.)

As you discuss your disease with your ocular oncologist, please be fully aware that a biopsy of your tumour at the time of treatment holds the secrets to your future. You can find out whether or not your cancer is likely to spread. If you are in the happy 50%, imagine the relief. If you are in the unfortunate 50%, your care plan will be different and early detection gives you much better chances for prolonging your life. Either way you derive benefit.

Some people are frightened of the information. It seems like too much information to have and denial might seem like a better option. Please consider the benefit of having the information. If you don’t want to know, perhaps you could ask your oncologist not to share the information until you are ready, but at least you have it to use it for planning care. The biopsy cannot be performed after the treatment.

It is important to note though that the testing is not 100% accurate as yet and planning for surveillance needs to take that into account too.

For sure, consider joining other patients in a group that is in the same situation as you. There are several different groups to choose from and you should easily be able to find a group that you think is helpful to you. Your participation can vary over time. Meet your own needs for information.

Click here for a list of resources and patient groups to help you

Metastatic ocular melanoma

Oh dear. You are probably reading this because you have been given some very sad news. Well, we have to try and make some sense of it. Has your eye cancer (ocular melanoma) been detected in another part of your body? What do you know so far?

Here are some important questions so you can check if you have the answers:

Where exactly has the cancer been found?
Have you had a PET scan to see if cancer is in other places too?
Have you had an MRI (with gadolinium) of the liver to gather the best information?
Have you had a biopsy to confirm that it is indeed melanoma?
How many tumours are there?
What are the exact dimensions of the tumours?
Where exactly is each tumour located?
If it is in the liver (90% of metastases are found here first), what percentage of the liver is affected?
If it is in the liver, is there evidence of miliary disease (peppering, or spots, all over)?

If you know the answer to some or all of the questions, you are ready to read on. If the cancer is in the liver (most likely) it is important to focus on liver directed treatment first. Is your oncologist offering radioembolization, immunoembolization or chemoembolization? In rare cases, surgery may be an option. It is possible to have systemic treatment (see below) at the same time as liver directed treatment if your body is well enough. Focussing on the liver is most important though as liver disease is life threatening.

If the cancer is outside the liver, is your oncologist offering you immunotherapy? This is considered a systemic treatment. There are several variations of this offered in Canada. You can read about which variation is most effective and why. If you are being offered chemotherapy, be very wary. For more than 30 years, patients have been offered dacarbazine as first line therapy and it is clearly proven to be ineffective for ocular melanoma. Treatment options have increased greatly.

If you are in a part of Canada where it is difficult to get treatment for this rare disease, will your oncologist refer you to a larger centre? You may have to fight for this.

Can your oncologist help you enrol in a clinical trial? There are several promising clinical trials recruiting but it is hard for Canadians to get into them. You can enrol if you try really hard. Timing is very important. Sometimes, the window of opportunity closes quickly. You also need to ask whether this particular treatment can bar you from others down the line.

Nigel at the Boston Finish

Reach out to others who know about the disease or are living with it. We are not alone.

Consider making other changes in your life that help all cancer patients. Sort through your priorities and focus on what is most important. Reflect on your diet and lifestyle and see if you want to make changes there. Diet will not cure cancer but it can certainly help you feel better and stronger. Try to spend as much time in nature as you can. Do what makes you happy. Avoid pursuits that bring unhappiness. Know yourself and what is important to you. Lean on good friends. These are just sensible changes to consider.

More resources and support: Ocumel Canada, an initiative of Save Your Skin Foundation

NOTE – August 22, 2018:

Save Your Skin Foundation is looking to improve and increase support of Canadians experiencing diagnosis of primary and/or metastatic ocular melanoma. To this end, in Feb-2018 we launched a survey to be shared across Canada, hoping to reach as many as possible. The survey is now closed, and we appreciate all of the responses we received, and all of the sharing that our readers did to spread the word about the survey. We have now completed the report and are working on next steps. Please click here to read the survey report: Save Your Skin Foundation Patient Survey: Understanding Ocular Melanoma in Canada

Thank you

The information in this blog is not intended to replace the medical advice of a doctor or healthcare provider. The content in this blog is based on Nigel’s personal experience and extensive research in Canada and abroad. If you have any questions about what you have read here please do not hesitate to ask your doctor, and/or you can contact us and we will help to connect you to further information.

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!

Natalie’s Story

Meaford, ON

In the spring of 2014, at 37 years old, I was diagnosed with Stage IIIB nodular melanoma. Over the course of six to eight months, a lifelong mole on my hip had grown, changed in colour, and become itchy. Being a busy working mother of eleven year-old twins, I neglected to have this mole looked at until my daughter insisted I show our doctor while in her office for a sore throat.

Two days later an excisional biopsy was performed and the pathology revealed a melanoma with Breslow depth of 12.5 mm, Clark level 5, and a relatively high rate of three mitoses per millimeter squared. The peripheral margins were quite close at 0.2 mm, however the deep margin was 6 mm. One week after finding melanoma in the mole, I had a sentinal node biopsy, revealing a further diagnosis of metastases. I still struggle to understand these terms, but I do know they have altered my life forever.

Within a month I had a right hip wide local excision to 2 cm margins, and a superficial and deep right groin lymphadenectomy, going home to be on strict bedrest for eight weeks. I had four of thirteen lymph nodes positive, therefore I received further treatment post-surgery, in the form of immunotherapy. I participated in a clinical trial at Sunnybrook in Toronto, receiving eight doses of ipilimumab over sixty-eight weeks; four treatments three weeks apart, and then four more treatments, each being three months apart, with the last one in September 2015.

I still have CT scans every six months to maintain surveillance on my melanoma. Although I am considered at high risk for recurrence, to date I am still clear and I am grateful to report that my life has resumed with hope and ambition. I am happy to share my story as it may help someone else feel less desperation in such a scary situation. Living with melanoma is not easy, but we are not alone.

Introducing: Ocumel Canada

Today we begin with a new hope for Canadians diagnosed with ocular melanoma.

SYSF Teams up with La Roche-Posay Canada at OneWalk Toronto 2018

Surviving Melanoma – Our New Video

Updates on our Support of Mental Wellness After Melanoma Diagnosis

Opening Our Eyes To Ocular Melanoma

Click here for a list of resources and patient groups to help you

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

Natalie’s Story

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Natalie’s Story

melanoma survivor

Today we begin with a new hope for Canadians diagnosed with ocular melanoma.

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