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CURE OM Global Science Meeting Recap

Creating a Shared Vision of Progress and Hope

Date of the meeting: November 6, 2023

Hosted by the Melanoma Research Foundation

The recent Cure OM Global Science Meeting held in Philadelphia aimed to foster a shared vision of progress and hope in the fight against ocular/uveal melanoma. The event brought together researchers, clinicians, industry partners, and patients to discuss advancements, clinical trials, and collaborative efforts. The mission, as emphasized by the Melanoma Research Foundation, is to eradicate melanoma through accelerated research, education, and advocacy.

This blog article summarizes some of the meeting’s highlights.

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Highlights

Dramatic Evolution in Research Landscape

  • Reflecting on the past decade, participants noted a significant shift in the ocular melanoma research landscape.
  • In 2013, industry partners didn’t participate actively in the discussion and the focus was on understanding the unique characteristics of uveal melanoma, distinct from cutaneous melanoma.
  • In 2023, the meeting showcased substantial progress with seven industry partners actively engaging in discussions, covering primary eye treatment, genetic prognostics, metastatic disease treatments and adjuvant and neo-adjuvant therapies.

Industry Partner Presentations

Aura provided updates on AU-011 (Bel-Sar), a virus-like particle conjugated with a light activated cytotoxin which aims to kill the tumor. It is either injected suprachoroidally or intravitreally and is light-activated. They presented some positive data showing the safety and efficacy giving us hope that perhaps this could be a new primary treatment that could treat primary uveal melanoma while sparing patients from dealing with the fallout from radiation-induced retinopathy. Bel-Sar will hopefully be moving into a phase three clinical trial.

Delcath discussed Hepzato, a recently FDA-approved liver-directed therapy which is set to be commercially available in early 2024.

Ideaya reported promising data in the Phase 1/2 trial of darovasertib and crizotinib, with pivotal trials now open at multiple sites in the US and abroad. Neoadjuvant and adjuvant trials will also be opening worldwide.

Immunocore presented on tebentafusp or Kimmtrak, the first FDA approved therapy for metastatic uveal melanoma. It is now widely available in the US and abroad. And there are some ongoing trials looking at other targets.

Replimune is looking to open a clinical trial in the uveal melanoma space. They are working on an intralesional (direct injection into the tumor) modified virus. It is a herpes virus that is modified with something called GM-CSF and other immune tweaks to help the immune system recognize the cancer. In a trial, metastatic uveal melanoma patients were given either just this injection or the injection in combination with nivolumab and the response rates were upwards of 28.6% with a disease control rate of 57.1%. There is hope that this clinical trial will be available to patients soon.

TriSalus presented on the ongoing Perio-1 clinical trial. This is an intra-hepatic artery delivery of an immune stimulant via a special catheter in combination with immune checkpoint inhibitors that are given peripherally.

Discussion Points

A key emphasis was placed on the growing interest and involvement of various companies in developing treatments for ocular/uveal melanoma. While this is a positive trend, speakers highlighted the need for collaboration to avoid competition between trials and ensure inclusivity. Physicians don’t want patients to feel that if they start one clinical trial, they won’t be able to go on another. Suggestions included making inclusion and exclusion criteria less restrictive, ensuring trials are accessible across different regions and supporting patients so that lack of access to clinical trials is not a reason to not participate.

Liver-Directed Therapy – Pros and Cons

The discussion then turned to liver-directed therapy, a crucial treatment approach for uveal melanoma. Dr. Orloff underscored the importance of understanding the pros and cons of liver-directed therapy, systemic therapy, and combination therapy. These considerations are crucial for patients facing decisions about the most suitable treatment path.

1. Liver-Directed Therapy:
  • In MUM, liver metastases are leading cause of death
  • Various liver directed treatments can be very effective at controlling hepatic metastases
  • Often well tolerated with limited side effects experienced between treatments
  • Some patients only require limited treatments with long treatment free intervals
  • Not restricted to any one population
  • Have one FDA approved LDT option (PHP)
  • MUM by definition is a systemic disease and extrahepatic disease can develop and lead to morbidity and rarely mortality
  • Requires institutional expertise
  • Patients may need to travel further for treatment
  • Some liver directed treatments require more extensive resources
  • Limited randomized trial data (comparing LDT or to systemic treatments)
2. Systemic Therapy:
  • Treatment of systemic disease (treats the whole body)
  • Tebentafusp is available and has an overall survival benefit and good side effect profile
  • Darovasertib + Crizotinib is also an option with a decent objective response rate (ORR) and disease control rate (DCR)
  • Tebentafusp is HLA restricted
  • It needs to be injected weekly
  • It has a low response rate and has a high rate of immune-related adverse event
  • It may not shrink tumours up-front
  • Often systemic trials are restricted to line of therapy
3. Combination Therapy:
  • Potential to control both hepatic and systemic metastasis
  • Opportunities for debulking tumors before systemic therapy
  • Synergy of liver directed treatment and systemic treatment especially when using systemic immunotherapy
  • Optimal combinations and sequences are unknown
  • Toxicities of both therapies need to be managed

Data Highlights and Proposed Studies

TriSalus

TriSalus presented data as a late-breaking abstract at the Society for Immunotherapy of Cancer (SITC) annual meeting. They are investigating their special catheter that allows infusion of SD-101 infusion in combination with immunotherapy. There have been multiple cohorts, and the results so far show a 58% disease control rate (DCR) across all SD-101 doses and an 81% DCR at two milligrams. Optimizing dosage is a focus, as higher doses may not necessarily be more effective. Preliminary overall survival signals are encouraging.

Percutaneous Hepatic Perfusion (PHP)

PHP is a catheter system facilitating closed-circuit liver perfusion with melphalan. Results from the focus trial, presented in 2022 at ASCO, demonstrated significant improvements in overall response and disease control compared to alternative care arms. Side effects, primarily related to bone marrow suppression, were noted.

Combination Trial Designs

Ongoing trials show promise in combining hepatic perfusion with immune checkpoint inhibitors.

  • The Scandium II trial compared hepatic perfusion (IHP) followed by immune checkpoint inhibitors (ICI), with ICI followed by IHP followed by more ICI. The Scandium III trial compared ICI alone with PHP followed by ICI.
  • Another trial presented by Dr. Orloff explored combining tebentafusp with liver-directed therapy. For lower volume disease, the design involves administering tebentafusp upfront, followed by liver-directed therapy. For higher volume disease, the design involves chemoembolization first, followed by tebentafusp.

Adjuvant and Neo-Adjuvant Clinical Trials

Three new trials will be opening soon in the adjuvant/neo-adjuvant space:

  • Quizinostat (University of Miami)
  • Neoadjuvant/Adjuvant Darovasertib
  • ATOM: Adjuvant Tebentafusp Ocular Melanoma

Tebentafusp in Practice

Dr. Butler, Dr. Sullivan and Dr. Seedor all presented on tebentafusp in practice. Tebentafusp is a bispecific molecule that brings T-cells to the tumour and have been showed to offer significant survival benefits. The challenge lies in translating clinical trial success to real-world scenarios, where patients might have more advanced disease.

Dr. Seedor shared case vignettes featuring patients with a substantial disease burden. These patients showed potential benefits from tebentafusp but Dr. Seedor suggested that stabilizing patients before initiating tebentafusp might be necessary for optimal outcomes.

Dr. Butler presented on the situation in Canada, where initial access to the drug was previously restricted to two centres, but has now expanded nationwide, enabling a diverse group of patients to undergo tebentafusp treatment. In a real-world grouping of patients, it was observed that stabilization or positive responses to tebentafusp were linked to improved outcomes, aligning with findings from clinical trials and showing that a variety of patients are experiencing benefits from tebentafusp.

Dr. Sullivan presented innovative data addressing the challenge of assessing tebentafusp’s impact on cancer. While the drug may not necessarily shrink tumours, it slows down their growth. Traditionally, oncologists rely on tumour shrinkage to gauge treatment efficacy. Dr. Sullivan discussed findings suggesting that even in cases of disease progression on imaging, a decrease in circulating tumour DNA correlates with a more favourable response to therapy. However, the specific assay used in the study isn’t commercially available. Dr. Sullivan found that there are several ways to analyze circulating tumour DNA and cells in the blood fraction and that one of them might be better suited to patients with uveal melanoma, suggesting that even patients who are on standard of care treatment may benefit from clinical trials that use this biomarker as a way to follow patients.

Systemic Therapies Highlights

Several presentations focused on systemic therapies.

Dr. Moser shared insights into emerging therapies:

  • Roginolisib – PI3Kδ inhibitors are showing promising results in patients and in animals
  • Radioligand therapy – A novel approach to targeting tumors using a molecule that brings radiation particles directly to the tumour to target tumour cells.
  • TCR Therapy – Promising trials are trying to target tumors with cell therapies. There are actually several different studies looking at TCR based therapies, CAR T-cell based therapies as well as tumor infiltrating lymphocyte therapies are being studied across the world to determine the best approach for patients.

Dr. Hamid explored byspecific antibodies in OM:

  • He highlighted the three-year survival rate for tebentafusp, which showed a consistent benefit in terms of overall survival. Unfortunately, not enough patients are doing really well five years later, but certainly, they’re doing better than they were on the investigator’s choice protocol.
  • Immunocore has a new agent called F106C that targets PRAME, which is an antigen expressed highly in uveal melanoma but also in other types of cancers. They’ve seen a high percentage of response in patients with uveal melanoma as well as skin tumours. And there are several follow up trials beyond the initial phase one to look at the role of this study in patients with uveal melanoma, cutaneous melanoma, as well as other tumours in the future.
  • Various different types of immune cells are being investigated for cancer treatment:
    • Lymphocyte cells that are allogeneic (cells that come from one person and are used in another person to fight the cancer)
    • CAR T-cell
    • Bispecific agents brought into a cell and infused as a therapy
    • Human mesenchymal stromal cells

Dr. Butler presented on Protein Kinase C Inhibition. He covered the promising results of darovasertib in combination with crizotinib for uveal melanoma, presenting a high response rate, even in patients with significant disease burdens. The phase one study, having transitioned to phase two/phase three, is now comparing darovasertib and crizotinib to immunotherapy or investigator choice in the first-line setting. The study aims to provide insights into the therapy’s duration, side effects, and optimal administration strategies across multiple centres. However, challenges remain, such as determining the sequencing of therapies, determining which patients should get the drug right away and which patients should be treated later on, and engaging with pharmaceutical companies to ensure patients have access to various treatment lines.

Dr. Khan reviewed data on immunotherapy with checkpoint inhibitors, pointing out that, while there is a higher response rate with combination immunotherapy, there are many more side effects with combination immunotherapy compared to single agent anti PD-1 therapy. Studies that compared ipilimumab + nivolumab versus nivolumab or pembrolizumab alone showed that the overall survival rate in these non-concurrent clinical trials are not that different. The response rate is a bit higher for combination versus single agent but there is no significant difference in overall survival.

One study looked at the LAG-3 combination of nivolumab and relatlimab and found that the response rate was higher than for a single agent, but a little bit lower than combination in that study. It may be an option for patients that want a higher response rate with less side effects.

Patient-Powered VISION Registry

Sara Selig introduced the VISION platform, a patient-powered real-world registry. With over 400 registered patients, the platform aims to collect data on diagnosis, barriers to treatment, and patient priorities. This valuable information aids in understanding the patient experience and advocating for improved resources and access.

In conclusion, the CURE OM Science Meeting showcased a vibrant landscape of advancements in ocular melanoma treatment. From neoadjuvant trials to real-world applications and promising biomarkers, the meeting underlined the collaborative efforts driving progress. As patients, advocates, and researchers continue to navigate this journey, the collective commitment to advancing knowledge and accessibility remains a beacon of hope.

Get Support

Save Your Skin Foundation wishes to bring hope and support to all those touched by melanoma, non-melanoma skin cancers, or ocular melanoma – whether they are newly diagnosed, currently undergoing treatment, in remission or referred to as “NED” (no evidence of disease).

WE INVITE ALL SKIN CANCER PATIENTS, AT ANY STAGE, TO GET IN TOUCH.

We are here to help. Call us at 1-800-460-5832 or email info@saveyourskin.ca

Learn about our other resources for ocular melanoma patients:

Ocumel Canada

Ocumel Canada, an initiative of Save Your Skin Foundation, was formed to increase awareness, advance treatment options, and build a supportive community for those diagnosed with primary and/or metastatic ocular melanoma (OM).

About Ocular and Uveal Melanoma

This page contains lots of information about ocular/uveal melanoma and resources for patients.

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8th Annual Patients Redefining the Future of Health Care in Canada Summit

Are you ready to be a part of a groundbreaking event that brings together patients, caregivers, and healthcare stakeholders from across the country? The 8th Annual Patients Redefining the Future of Health Care in Canada Summit is here! Mark your calendars for the week of Nov. 13 and get ready to be inspired, educated, and empowered to shape the future of healthcare in Canada.

This annual patient education and awareness Summit is a collaborative effort between two organizations – Save Your Skin Foundation and the Canadian Psoriasis Network, in conjunction with an Indigenous volunteer from Kiyasiw Consulting. Together, they are committed to elevating the voices of patients and caregivers, amplifying their experiences, and addressing long-standing systemic issues related to equity and oppression in our health systems.

What to Expect:

The Summit promises an exciting lineup of community leaders, advocates, and experts who will engage in insightful discussions about the challenges faced in meeting people where they are at, highlighting Indigenous health needs, and exploring opportunities to modernize healthcare to meet the needs of all Canadians.

The Schedule:

  1. Nov. 13 – Challenges to Meeting People Where They’re At
    • Time: 11 AM – 4 PM EST
  2. Nov. 15 – Highlighting Indigenous Health Needs
    • Time: 12 PM – 4 PM EST
  3. Nov. 16 – Opportunities to Modernize Health Care to Meet the Needs of All
    • Time: 12 PM – 4 PM EST
  4. Nov. 17 – Patient Planning Session (restricted to patients/caregivers and related groups)
    • Time: 12 PM – 1:30 PM EST

Why Attend:

This summit is a unique opportunity to engage in open dialogue, gain valuable insights, and contribute to the transformation of the Canadian healthcare system. It’s a chance for patients, caregivers, and healthcare stakeholders to come together, share their stories, and collectively find ways to create a more inclusive and patient-centric healthcare environment.

By attending the summit, you will:

  1. Learn about the challenges faced by patients and caregivers in accessing healthcare services.
  2. Understand the unique healthcare needs of Indigenous communities and how to address them effectively.
  3. Discover opportunities to modernize healthcare and make it more accessible and inclusive.
  4. Connect with like-minded individuals and organizations dedicated to making a positive impact on Canadian healthcare.

Check out some of our content from last year’s Summit!

Ready to Register?

We’re thrilled to have you join us at the 8th Annual Patients Redefining the Future of Health Care in Canada Summit. Registration is now open, and you can secure your spot by clicking the link here!

Don’t miss out on this exceptional opportunity to be a part of a movement that aims to reshape the future of healthcare in Canada. Let’s work together to create a healthcare system that meets the needs of all patients, regardless of their background or circumstances.

We look forward to seeing you at the Summit!

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Ocular Melanoma Patient & Caregiver Symposium

Happening virtually over two days, April 15 & 16, 2023, the first Canadian OM Patient & Caregiver Symposium will include presentations by Canada’s leading experts in Ocular Oncology and patients living with Primary and Metastatic Ocular Melanoma.
Stay tuned for more details and registration!
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Patient Reported Experience Measures: 2022 Highlights!

In 2022, Save Your Skin Foundation ran three major patient surveys in order to collect patient-reported experience measure data (PREMs): 

  • “The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma” (April/May)
  •  “The Patient Experience: Treatment of Patients with Ocular Melanoma” (April/May)
  • “Patient Survey: Treatment Plan Decision-Making” (September/October)

Long-form reporting of the data for “The Patient Experience: Treatment of Patients with Ocular Melanoma” and “Patient Survey: Treatment Plan Decision-Making” are available on the Save Your Skin website. “Treatment Plan Decision-Making” was available in both English and French, and was developed in partnership with AIM at Melanoma. The following blog highlights some particularly notable outcomes from these surveys; we hope you find something of interest to you!

 

Highlights from “The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma”
  • When asked if they would consider it reasonable to receive additional treatments should their melanoma recur at a later stage, 78.26% directly indicated that they would be interested in additional treatments (Q12).
  • When asked specifically about their experiences on Pembrolizumab (Keytruda™), 73.68% reported enduring fatigue as a side effect, followed in frequency of votes by skin rashes (36.84%) and cognitive impairment (26.32%) (Q17). 61.11% found these side effects manageable (Q18).
  • 95.45% of participants indicated that the side effects resulting from this therapy were worth it for the benefits of the treatment (Q19).
  • When asked if they would consider receiving drug therapy from a clinical trial, 77.27% responded that they would, should the need arise. Of the 22.73% that responded “not sure,” several added comments indicating that they would consider it, but would need more information (Q22).

 

Highlights from “The Patient Experience: Treatment of Patients with Ocular Melanoma”
  • 63.63% of our ocular melanoma survey participant pool who have not received genetic testing would like to, suggesting that many patients see this as a worthwhile process (Question 11).
  • Unsurprisingly, eye-related side effects are the most common for patients with ocular melanoma. These include loss of vision (64.51% of responses), eye pain (16.12%), cataracts (9.67%), flashes of light in the eyes (12.9%), dry eyes (3.22%), macular edema (3.22%), and retinopathy (3.22%) (Q16).
  • 82.35% of participants have ongoing follow up appointments/testing every 3-6 months (Q20).
  • 79.31% of responses suggested that if their disease were to progress in the future, they would be interested in receiving additional treatments (Q21).
  • 64.71% of survey participants indicated that if they were offered enrolment in a clinical trial, they would take it (Q24).
  • The most frequently cited side effects by participants receiving KIMMTRAK ® (tebentafusp-tebn) for their ocular melanoma were fatigue and skin rashes (both selected by 50% of participants) (Q28).
  • 100% of patients who received KIMMTRAK ® (tebentafusp-tebn) noted that the side effects of this treatment were worth enduring for the survival benefit (Q30)
  • The most frequently cited barrier to accessing KIMMTRAK ® (tebentafusp-tebn) was having to travel to another city, which was both an inconvenience and a financial hardship (Q31).

 

Highlights from “Patient Survey: Treatment Plan Decision-Making” English language survey
  • When asked what was the most important topic to discuss with their healthcare team at the time of diagnosis out of the following options: “care plan,” “prognosis,” “treatment timeline,” “quality of life,” and “financial considerations,” survey participants selected “prognosis” as their primary concern, followed by “treatment timeline” and then “care plan.” That “quality of life” and “financial considerations” are the lowest priorities suggests that patients care about survival above all else (Q7).
  • Questions nine and ten demonstrated that patients are creating a treatment plan with their healthcare team along their ideal timeline, which is either at the time of diagnosis or between their first and third appointments.
  • The majority of survey participants (76.56%) stated that they understood at least “most” of the cancer-related information provided to them (Q12); however, 32.82% expressed dissatisfaction with the amount and quality of the information they received (Q21).
  • When asked what resource they most frequently turn to for cancer-related information (other than their healthcare team), the internet was cited by 82.54% of participants (Q13)
  • Questions 15 and 16 illustrated that 73.44% of participants feel they had an appropriate amount of input in developing their treatment plan. 
  • When asked to prioritise the following factors when developing a care plan: “dosing schedule/logistics,” “long-term survival,” “risk of adverse events/side effects,” “financial concerns,” and “lifestyle and family implications,” patients ranked “long-term survival” as their highest priority (Q17).
  • When asked to indicate the two most significant challenges they experienced during treatment, the need for emotional support (60.94%) and the impact of physiological symptoms (45.31%) had the highest number of votes (Q27).

 

Highlights from “Patient Survey: Treatment Plan Decision-Making” French language survey
  • When asked what was the most important topic to discuss with their healthcare team at the time of diagnosis out of the following options: “care plan,” “prognosis,” “treatment timeline,” “quality of life,” and “financial considerations,” survey participants selected “care plan” as their primary concern, followed by “prognosis” and then “quality of life” (Q7).
  • Like the English language cohort, the French language survey participants received care plans along their ideal timeline of either at the time of diagnosis or between the first and third appointments (Q9, 10).
  • In the French language survey, a greater percentage of participants indicated having more responsibility for the development of their care plans. Only 27.27% felt “appropriately involved,” while 63.63% indicated that they made the decision more independently (Q15).
  • When asked to prioritise the following factors when developing a care plan: “dosing schedule/logistics,” “long-term survival,” “risk of adverse events/side effects,” “financial concerns,” and “lifestyle and family implications,” the French language patients also ranked “long-term survival” as their highest priority (Q17).
  • When asked whether they felt prepared for treatment, participants had polarised responses; 63.64% reported feeling “entirely prepared for treatment,” while 27.27% were “mostly unprepared for treatment” (Q24).
  • When asked to indicate the two most significant challenges they experienced during treatment, the French language survey participants voted most frequently for physiological symptoms (54.55%), followed by emotional support and a lack of information, which were tied for votes (36.36% each). This suggests that the need for emotional support is more satisfied for the French language survey participants (Q27).

 

The data from patient reported experience measures, sampled above, is instrumental to our operations as a patient group. We consider these reports when we are prioritizing our initiatives for the new year, preparing our strategic plans for patient support, education, awareness, health policy, and advocacy, and share them with other stakeholders in the cancer space. We hope this information was valuable to you, and that the new year brings you joy, prosperity, and good health.

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November is Ocular Melanoma Awareness Month

November is Ocular Melanoma Awareness month – and it is the time of year we at Save Your Skin Foundation and Ocumel Canada bring extra public awareness to the importance of dilated eye exams for the detection of ocular melanoma.

Through our work, we will continue the conversation and maintain the #EyeGetDilated campaign beyond November, so that all Canadians can learn about their options for head to toe body health and to include eye checks in their list of doctor exams.

Early detection is incredibly important for many eye diseases, including ocular melanoma. Ocular melanoma is rare, affecting approximately five in a million people. About 200 cases are diagnosed per year in Canada. While it represents only 5% of melanomas, ocular melanoma can be rapid and aggressive, accounting for 9% of melanoma deaths. Also referred to as uveal melanoma, ocular is a more inclusive term; 90% of primary ocular melanoma develops in the choroid.

To read more about the importance of annual dilated eye exams, click on Brianne’s story below:

We are proud to have partnered with the groups BC Doctors of Optometry and Alberta Association of Optometrists!

 

 

 

 

 

 

For more information about Ocumel Canada and the work we do, visit any of the following pages:

OcumelCanada.ca

About Ocular Melanoma

Helpful Links

Resources and Support

If you or someone you know has been diagnosed with primary or metastatic ocular melanoma, connect with our community of support, Canadian bilingual Facebook group:  Ocular Melanoma Connect/Connexion mélanome oculaire 

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Upcoming Webinar: Prognostic Testing and What It Means to Ocular Melanoma Patients

Join us for a free webinar on Wednesday, September 14 at 5pm PST | 8pm EST.

In this webinar, Katherina Alsina, PhD, Castle BioSciences, Dr. Ezekiel Weis, Provincial Medical Lead, Alberta Ocular Brachytherapy Program, and Dr. Marcus Butler, Medical Oncologist, Princess Margaret Cancer Centre, will help patients understand prognostic testing when diagnosed with Ocular Melanoma. They will also discuss options for HCPs for prognostic testing, what it can mean to patients and how it can affect treatment decisions. The presentations will be followed by a live Q&A session.
Click here to register
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Big steps forward in OM treatment & support in Canada

Ocumel Canada in the News

As Ocumel Canada continues to support and advocate for patients touched by ocular melanoma (OM), we are happy to see a monumental step forward in the treatment of this disease across Canada. Last week, Health Canada granted a notice of compliance (NOC) for Kimmtrak® (tebentafusp) for the treatment of metastatic ocular melanoma, closely following approvals in the United States, Australia, and the European Union.

Many patients with this rare cancer have been needing to travel from their home provinces coast to coast – to Toronto – for treatment, which is not an ideal situation for any patient, as they need to be close to their home and support system for ease and comfort as they fight this disease. Ocumel Canada is happy to report that in partnership with treating Physicians and Partners we are making progress in this situation and getting patients treated closer to home.

Global News spoke to two patients in this interview, click HERE to watch the recording.

Ocumel Canada and Save Your Skin Foundation applaud Health Canada’s approval of Kimmtrak® (tebentafusp) for the treatment of unresectable or metastatic uveal melanoma in HLA-A*02:01-positive adult patients. We now hope that every province and territory will take swift steps to list this drug on their public formularies in order to make this therapy available to patients across Canada.

We thank all patients and their caregivers who shared their experience and feedback to this process. To learn more about this immunotherapy treatment and the approval, read our full press release by clicking HERE.

To add to all of this great news – we wish to invite all Canadian OM patients or caregivers to join the VISION Registry, an online research database created by our friends at CureOM, Melanoma Research Foundation.

The database will allow researchers to better understand ocular melanoma (OM) as well as the needs and preferences of patients. For example, researchers can look at the socio-demographics, genetics, accompanying conditions, and treatments of patients from around the world and any potential links to OM that might exist.

The research will also look at patients’ experience from onset of symptoms to confirmed diagnosis and how that can be improved.

For the VISION Registry to be successful we need as many patients as possible to securely share their data. There is power in numbers!  Please register and add your information to the registry. We are eager to learn together to advance knowledge and eventually find a cure for OM.

(At this time, the registry is available in English only, but we are working on a French-Canadian translation, stay tuned!)

Click here to learn more and join the Vision Registry: https://melanoma.org/visionregistry/

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Looking Back at 2021

Our 2021 Annual Reports are out now!

It’s always a rewarding experience to look back on the past year and see how much the Foundation has accomplished.

Despite another year amid the pandemic, Save Your Skin Foundation and Ocumel Canada have continued to grow partnerships, operations and services, and reach more people touched by melanoma, non-melanoma skin cancer and ocular melanoma.

We are extremely grateful to our community of patients, caregivers, healthcare providers and sponsors who continue to inspire and support us in our endeavors.

Click on the images below to view the reports:

 

 

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Webinar: Diagnosed with Skin Cancer? Here’s What To Do Next

View the recording of our webinar ~ February 24, 2022

An Hour with Kathy Barnard

In this webinar, Kathy Barnard, founder of SYSF and melanoma survivor, shares her experience navigating and advocating through the Canadian health care system, which is complicated and can be confusing to many. She helps patients and caregivers understand how to get from diagnosis to surgical and/or systemic treatment of melanoma or non-melanoma skin cancer (NMSC) such as metastatic basal cell carcinoma (BCC), squamous cell carcinoma (SCC) or merkel cell carcinoma (MCC).

Click HERE to view the recording!

And click HERE to download/print a list of Questions you can ask your Doctor

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Continuing Ocular Melanoma Awareness all year round

November is Ocular Melanoma Awareness month – and it is the time of year we at Ocumel Canada bring awareness to the importance of dilated eye exams for the detection of ocular melanoma.

We will take this opportunity though, to continue the conversation and maintain the #EyeGetDilated campaign beyond November, so that all Canadians can learn about their options for head to toe body health and to include eye checks in their list of doctor exams.

Early detection is incredibly important for many eye diseases, including ocular melanoma. Ocular melanoma is rare, affecting approximately five in a million people. About 200 cases are diagnosed per year in Canada. While it represents only 5% of melanomas, ocular melanoma can be rapid and aggressive, accounting for 9% of melanoma deaths. Also referred to as uveal melanoma, ocular is a more inclusive term; 90% of primary ocular melanoma develops in the choroid.

To read more about the importance of annual dilated eye exams, click on Sheila and Leanne’s stories:

 

 

 

 

 

 

 

 

We are proud to have partnered with the groups BC Doctors of Optometry and Alberta Association of Optometrists! Please click here to learn more about them and how they have supported the #EyeGetDilated campaign this year:

 

 

For more information about Ocumel Canada and the work we do, visit any of the following pages:

OcumelCanada.ca

Ocumel Canada – About Ocular Melanoma

Ocumel Canada – Helpful Links

Ocumel Canada – Resources and Support

If you or someone you know has been diagnosed with primary or metastatic ocular melanoma, connect with our community of support, Canadian bilingual Facebook group:  Ocular Melanoma Connect/Connexion mélanome oculaire 

Read more