ocular melanoma

ASCO 2020 Event Report

In 2020, the American Society of Clinical Oncology meeting was held online due to the COVID-19 pandemic. The meeting took place from May 29th-31st, with the last two days being devoted to online presentations.

This report will be dedicated to the presentations that representatives from Save Your Skin Foundation remotely attended, with a focus on melanoma, innovative treatments, and survivorship. The information in this report is sourced directly, occasionally verbatim, from ASCO presentations and abstracts. If you require more information on an abstract, the clinical trial numbers (where available) are included for your reference.

Please CLICK HERE to read or download the report.


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Rare Disease Day is February 29th

Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases. February 29, 2020 will be the 13th international Rare Disease Day. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities.

What is a Rare Disease?

There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world.

1 in 12 Canadians is living with a rare disease.

Rare diseases currently affect 3.5% – 5.9% of the worldwide population.

People living with a rare rare disease need equitable access to diagnosis, treatment and care.



There are several types of rare and dangerous skin cancer. Click on each below to learn more:




Events in Canada

Join five national rare disease organizations at an interactive exhibit to bring visibility to the many ways that living with a rare disease can impact the lives of everyday Canadians.

When: Fri, February, 28th, 8am – 6pm

Where: Sam Pollock Square, within Brookfield Place.

What: This exhibit will highlight the experiences of a number of patients from across the country. Public, patients, caregivers, and policymakers are welcome to explore, interact, and share what makes YOU rare.

The event will be hosted by radio personality and broadcaster Josie Dye, who shares a special connection to Canada’s rare disease community.

For us, our partners, and the approximately 1 in 12 Canadians living with a rare disease, every day is Rare Disease Day.

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#EyeGetDilated – Awareness Campaign for Ocular Melanoma – November 2019

The 4th annual #EyeGetDilated campaign kicks off November 1st!

Throughout the month, CURE OM, an initiative of Melanoma Research Foundation in the United States, will be utilizing social media, guest blogs, videos and more to promote and educate about the importance of eye health and encourage everyone to include a dilated eye exam in their annual wellness routine.

Early detection is incredibly important for many eye diseases, including ocular melanoma.

To expand their reach internationally, CureOM has invited Ocumel Canada to partner with them for this year’s awareness campaign! If you’d like to participate, please re-post information from the CURE OM and MRF, and Ocumel Canada, social media channels during the month to spread the news about the importance of dilated eye exams, and share your own messages too! You can also request our free “Missing a Check?” postcards to take to your local doctors to include in their annual wellness reminders or click here to download a PDF copy. Suggested places to hand out postcards/flyers (with permission) include your primary care/family physician, optometrist and dermatologist. Email us to find out more!

To read more about the role of a Dilated Eye Exam in early detection of Ocular Melanoma, please click here to read this blog by Carol L. Shields, MD:

Get your eyes dilated once a year for life. Detection of melanoma when it is small is important as life prognosis is far better. It should be known that about 10% of Caucasians in the United States have a choroidal nevus and this could be a precursor to melanoma. Any patient who has different colored iris should be checked twice yearly, as this too could be a precursor to melanoma. If there is a family history of other cancers like renal cell carcinoma, mesothelioma, or others, you should have your eyes checked as uveal melanoma can occur also with these other malignancies under the umbrella syndrome called BAP 1 cancer predisposition syndrome.  Click here to read the full article.

And click here to read more about Ocumel Canada and resources we offer across Canada: About Ocumel Canada





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ASCO 2019 Event Report

The 2019 American Society of Clinical Oncology Annual Meeting took place from May 31-June 4, 2019 in Chicago, Illinois. This event brings together over thirty thousand oncologists, pharmaceutical representatives, and patient advocates from across the world and across cancer types for five days of networking, learning, and presenting new research.

Every year, Save Your Skin Foundation puts together a report of the panels regarding updates on the innovative treatment of melanoma, non-melanoma skin cancer, and ocular melanoma. Included in the report are detailed recollections of these panels, in chronological order.

Please CLICK HERE to download and read the report.


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Introducing Think Uveal Melanoma, by Immunocore

We are happy to share with you the launch of chapter 1 of a new Uveal Melanoma Disease Education Campaign website by Immunocore, (Note: Please use Google Chrome for the best user experience). We are pleased to endorse this website and to share it with our Medical Advisory Board and membership.

This initiative is an important milestone in educating and increasing the knowledge of ocular and uveal melanoma (UM) and its unique requirements, for healthcare professionals. This includes increasing the knowledge surrounding the diagnosis, referral, monitoring and treatment of UM, across the full spectrum of key stakeholders, such as Ophthalmologists, Ocular Oncologists, Retina Specialists, Medical Oncologists, in both community and academic centers.

This global campaign consists of three chapters that will be launched over the course of this year. Chapters 2 and 3 will educate healthcare professionals about the differences between uveal and cutaneous melanoma and the limitations of current treatment options. Global experts in the field of UM are partnering with Immunocore to create meaningful and relevant content. A multi-channel engagement campaign is surrounding the website to reach a broad range of key stakeholders and allowing for multiple virtual touchpoints.

Ultimately, Immunocore wants to

  • raise awareness of the unmet need in UM
  • educate physicians and other key stakeholders on metastatic UM (mUM) and the differences to metastatic cutaneous melanoma (mCM)
  • convey their commitment to exploring ways to address the distinct unmet needs of patients with UM


Click here to view the website, background information, and even an interactive module which simulates possible symptoms of UM:

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Melanoma Awareness Month – May 2019

May is Melanoma Awareness Month

May is Melanoma Awareness Month and it’s the perfect time of year to review a few easy steps we can all take to Be Sun Safe!

Spread Awareness

Join us in spreading the word about Melanoma Month by using one of our facebook banners as your cover photo! They are available for download HERE:

Sun Safety

Help us share the message about Sun Safety! Download our Sun Safety infographics by clicking on the images below and share with your friends and family!


Examine Your Skin

Learn how to perform a monthly skin self-exam!  When caught early, skin cancer is very treatable.

Patient Support

For those living with melanoma, support can be vital to the healing process. Save Your Skin Foundation provides a collection of resources as well as several ways for patients to connect with others or with private support. If you know someone touched by melanoma, please help them to connect with us.

We provide one-on-one support through Founder Kathy Barnard. We also provide support from other patients and survivors through our initiative “I’m Living Proof”

Click HERE for a summary of the ways you can connect with other patients, survivors, and caregivers touched by melanoma and non-melanoma skin cancers, and ocular melanoma.

Press Release

If you’re interested in what Save Your Skin is working on for Melanoma Awareness Month, check out our official press release, which includes vital information about melanoma rates in Canada, prevention and detection, and how to support those battling skin cancer.

Public Service Announcement

Click here to watch our new video cut about sun safety and skin cancer awareness:



Stay tuned for more updates throughout May – Melanoma Awareness Month!

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SYSF Webinar: Ocular Melanoma

Ocular Melanoma – Innovative Treatments and Beyond

With Presenters:

Dr. Marcus Butler, Princess Margaret Cancer Centre, Toronto, Ontario, Canada

Dr. Omid Hamid, The Angeles Clinic and Research Institute, Los Angeles, California

Nigel Deacon, Ocular Melanoma Survivor/Patient, British Columbia, Canada

This webinar provides an update on the landscape of metastatic ocular melanoma treatment in Canada and the United States. Dr. Hamid and Dr. Butler share their knowledge of current practices and care pathways, identifying the most pressing needs for patients. They also discuss innovative treatment options such as IMCgp100, as well as clinical trials available to Canadian patients with ocular or uveal melanoma. Nigel Deacon shares his experience with this rare cancer; Kathy Barnard facilitating.

Missed the webinar? Listen to a recording of the presentation here, or watch it on our YouTube channel here.

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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 , email, 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

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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. 

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