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uveal melanoma

Understanding Melanoma on the Eye: Types, Diagnosis, and Treatment Options

Melanoma on the eye, also known as ocular melanoma, is a rare but serious form of cancer that develops from melanocytes, the cells responsible for producing melanin. This pigment gives color to the eyes, skin, and hair. In this blog post, we’ll delve into the types of ocular melanoma, its diagnosis, and available treatment options. [1]

Types of Ocular Melanoma

Ocular melanoma includes ocular melanoma, also called uveal melanoma, and conjunctival melanoma. [2]

Ocular/Uveal Melanoma

The uvea is a three-layered part of the eye. It is made up of the choroid, iris and ciliary body. Uveal melanoma can form in any of these layers and is named for where it forms:

  • Choroidal melanoma begins in the layer of blood vessels – the choroid – beneath the retina. It is the most common type of uveal melanoma. A 2012 article by the American Academy of Ophthalmology discusses the differences between choroidal nevi and choroidal melanoma.
  • Iris melanoma occurs in the front, colored part of the eye. Iris melanomas usually grow slowly and do not typically metastasize, or spread, to other parts of the body outside the eye.
  • Ciliary melanoma originates in the ciliary body, situated in the front of the uvea, responsible for secreting aqueous humor into the eye. These melanomas may grow anteriorly, visible on biomicroscopy as a darkly pigmented mass behind the pupil. Pigmentation can vary. Notably, ciliary melanomas tend to progress more rapidly, with a higher likelihood of metastasizing to the liver, compared to iris melanomas.

Treatment for ocular melanoma may involve procedures such as radioactive plaques, proton beam therapy, or even eye removal.

Recent advancements, such as the Health Canada approval of Kimmtrak in June 2022, provide hope for patients with unresectable or metastatic uveal melanoma.

Conjunctival Melanoma 

The conjunctiva is the clear tissue that covers the white part of the eye, as well as the inside of the eyelids. Conjunctival melanoma is very rare. It often appears as a raised tumor and may contain little or even no pigment. Conjunctival melanoma most commonly occurs in the bulbar conjunctiva – the mucous membrane that covers the outer surface of the eyeball. Unlike other forms of ocular melanoma that spread most often to the liver, when conjunctival melanoma spreads, it most often spreads to the lungs.

Individuals diagnosed with conjunctival melanoma may undergo resection, cryotherapy, topical chemotherapy, or radiation as part of their treatment plan.

melanoma on the eye

Diagnosis and Prognosis Melanoma on the Eye

Diagnosing ocular melanoma often involves routine eye exams, where some cases may be asymptomatic. The prognosis varies, with uveal melanoma recurrence occurring in less than 5% of cases after primary treatment. However, approximately 50% of people with uveal melanoma may develop metastases, typically in the liver. [3]

Treatment Options

Treatment for melanoma on the eye depends on the type, location, and stage of the cancer. The aim is to control the primary tumor and prevent recurrence or metastasis. In advanced cases, a range of treatments, including immunotherapy, molecularly targeted agents, and liver-directed therapies, may be employed.

Ocular melanoma, though rare, poses unique challenges in diagnosis and treatment. Collaborative efforts between patients, healthcare professionals, and researchers are crucial for advancing our understanding and developing more effective treatments. Ongoing research and recent breakthroughs, such as the Health Canada approval of Kimmtrak, offer hope for improved outcomes in the fight against ocular melanoma.

Get Support

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/uveal melanoma (OM).

WE INVITE ALL OM 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 More About Immunotherapy

Immunotherapy is a drug treatment that uses the human body’s own immune system to fight cancer.  It may be administered to patients intravenously in the Chemotherapy Unit of the hospital, but it is not the same as chemotherapy.

Learn More About Targeted Therapy

Targeted therapy drugs are designed to specifically target cancer cells. For melanoma, these drugs target the activity of a specific or unique feature of melanoma cancer cells.

Learn More About Clinical Trials

New treatments are tested in clinical trials before they are approved for general use. There are safeguards in place to ensure clinical trials are as safe as possible and meet medical ethical standards. Participating in a trial can be a way to have access to potentially helpful new therapies you couldn’t get otherwise.

[1] “Cancerous Tumours of the Eye.” Canadian Cancer Society, cancer.ca/en/cancer-information/cancer-types/eye/what-is-eye-cancer/cancerous-tumours. Accessed 4 Jan. 2024.

[2] “CURE OM – Melanoma Research Foundation.” Melanoma.org, 27 June 2023, melanoma.org/patients-caregivers/cure-om/. Accessed 4 Jan. 2024.

[3] “Ocular Melanoma.” AIM at Melanoma Foundation, www.aimatmelanoma.org/melanoma-101/types-of-melanoma/ocular-melanoma/. Accessed 4 Jan. 2024.

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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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Coping with the Emotional Impact of Cancer – Mental Health Week

Empowerment Through Connection: Join us during Mental Health Week for a special webinar tailored to individuals actively managing their cancer diagnosis, caregivers providing unwavering support, survivors navigating the aftermath, and anyone touched by cancer.

We’ll delve into the unique emotional and psychological dimensions of the cancer journey, fostering resilience and building connections within this community.

Our featured speakers include

  •  Dr. Sue Johnson, Founding Director of the Ottawa Couple and Family Institute and the International Centre for Excellence in Emotionally Focused Therapy;
  • Lyanne Westie, SYSF Wellness Support Consultant;
  • Guest speaker

Join us for an enriching and supportive discussion that aims to empower you on your cancer journey. Together, we can foster resilience and build lasting connections.

REGISTER TODAY!

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ASCO 2023 Data Report

Earlier this summer, Save Your Skin was fortunate enough to attend the American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago, Illinois, in order to hear the latest data from melanoma clinical trials. We are pleased to present the highlights from these exciting studies in our annual ASCO report, which this year includes data from trials relating to melanoma, non-melanoma skin cancers (NMSC), and uveal (ocular) melanoma. Please keep in mind that ASCO is an international association, and therefore studies outlined in this report are not exclusive to Canada.

This report includes:

  • Trial updates related to melanoma, non-melanoma skin cancers (NMSC), and uveal (ocular) melanoma
  • A glossary of abbreviations used in the report
  • A selection of melanoma-related news articles from the summer for supplemental reading

You can read the report here or by clicking on the cover image below. Thank you for reading!

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Patient Fireside Sunshine Chit-Chat: A Virtual Summer Catch-Up

5-6 PM PT | 8-9 PM ET

AUGUST TOPIC

Fireside Sunshine Chit-Chat: A Virtual Summer Catch-Up

This call will last 1 hour!
Fireside Sunshine Chit-Chat: A Virtual Summer Catch-Up
We are delighted to invite you to our upcoming Fireside Chat, where we will embrace the carefree spirit of summer and bask in the sunny side of support! 🌞
This month’s chat will be a summer-themed get-together filled with meaningful conversations and connections. Instead of adhering to a specific agenda, we have designed a relaxed environment for engaging discussions and positive interactions. 🏖️
Whether you have experienced cancer firsthand, are a survivor, a dedicated caregiver, or simply seek understanding companionship, this gathering is tailored to suit your needs. Join us as we share personal journeys, catch up, lend empathetic ears, and forge lasting bonds that will illuminate this summer season. 🌈
Our aim is to cultivate a support community that radiates warmth and comfort. So mark your calendars, share the news, and let’s create unforgettable memories this summer! We look forward to seeing you there!

REGISTER TODAY!

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Embracing Connections: A Virtual Gathering for Ocumel Canada

Join us on July 12, 2023, at 5pm PST/8pm EST for a special virtual get-together hosted by Ocumel Canada. This unique event aims to create a safe and supportive space that fosters kindness and understanding.

Whether you’re a patient, caregiver, or anyone affected by Ocular/Uveal Melanoma, we invite you to come together for an hour-long call filled with inspiration and connection. Share your experiences, find solace in the company of others who understand, and discover the power of a compassionate community.

During this virtual gathering, we’ll provide a platform for open dialogue, encouraging participants to discuss whatever is on their minds. Together, we can uplift and empower one another as we navigate the complexities of living with Ocular/Uveal Melanoma.

Don’t miss this opportunity to connect with like-minded individuals, exchange stories, and find strength in shared experiences. Register now and mark your calendar for an evening of support, resilience, and hope. Let us stand united in the face of Ocular/Uveal Melanoma.

Please let me know your thoughts! Once you do, our team can begin promoting this on our website & social pages. On Monday we will brainstorm how this call should be ran but if you have any ideas please feel free to let me know.

REGISTER HERE! 

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Monthly Patient Fireside Chat – Nurturing Wellness and Self-Care in Cancer Patients, Caregivers & Survivors

 

JULY TOPIC

Nurturing Wellness and Self-Care in Cancer Patients, Caregivers & Survivors

Join us for our upcoming July Fireside Chat, where we will be focusing on an important topic that often goes unnoticed – the wellness and self-care of patients, caregivers, and survivors who have faced melanoma, non-melanoma, skin cancers, and Ocular/uveal melanoma in the past.

Amidst the recent discussions in oncology and Survivor Day, we believe it’s essential to take a moment to pause, breathe, and check in on everyone’s overall well-being. Our Fireside Chat will provide a safe and supportive environment for open conversations about wellness, self-care, sharing experiences, and exploring strategies for support.

Whether you have personally battled cancer or have been a caregiver or survivor, we invite you to join us for this meaningful discussion. It’s crucial to acknowledge the emotional impact that cancer can have and provide resources and support for maintaining overall well-being throughout the journey.

Together, let’s create a space where we can listen, empathize, and learn from one another. Mark your calendars and join us for this July Fireside Chat dedicated to nurturing wellness and self-care in those affected by various forms of cancer.

REGISTER TODAY!

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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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