Share with others! EyeMelanoma.org gets you quickly to the info & resources you need
Share with others! EyeMelanoma.org gets you quickly to the info & resources you need
On this page, you will find links to many educational resources:
These guides, written for patients and their families, provide printable overviews on testing, diagnosis, and treatment of ocular melanoma — primary and metastatic. The date of last revision is shown.
>> American Cancer Society's Ocular Melanoma Guide — Subsections updated individually with some pages from 2018 to as recently as 2024 noted in PDF version.
>> CURE OM's Ocular Melanoma Patient Guide — Undated publication.
>> National Cancer Institute's [Adult] Intraocular (Uveal) Melanoma Treatment Guide — Patient Version — September 2023. (Also in Spanish. Also as a Health Professional Version.)
>> National Cancer Institute's Childhood Intraocular (Uveal) Melanoma Treatment Guide — Patient Version — August 2021. (Also in Spanish. Also as a Health Professional Version.)
Other Countries:
>> Cancer Council Australia's Guide for Understanding Ocular (Uveal) Melanoma — February 2021.
>> Melanoma Focus' Uveal Melanoma Guide [for United Kingdom] — November 2023.
>> Melanoma Institute Australia's Patient Guide on Early Ocular Melanoma — July 2021; and MIA's Patient Guide on Advanced Ocular Melanoma — July 2022.
>> OcuMel UK's Booklet on Metastatic Uveal Melanoma [for United Kingdom] — June 2023.
Free online registration is required the first time you access these guidelines. Select 'create account' in the log-in box.
"The National Comprehensive Cancer Network is a not-for-profit alliance of 33 leading cancer centers [in the United States] devoted to patient care, research, and education. [...] NCCN Guidelines document evidence-based, consensus-driven management to ensure that all patients receive preventive, diagnostic, treatment, and supportive services that are most likely to lead to optimal outcomes. [...] The intent of the NCCN Guidelines is to assist in the decision-making process of individuals involved in cancer care — including physicians, nurses, pharmacists, payers, patients, and their families."
"The Uveal Melanoma UK National Guidelines have recommended standards of care for all of our patients across the UK. These updated guidelines include recent advances in our understanding of the distinct biology of this disease, assess the evidence for recent improvements in care, and have a renewed focus on patient experience. [...] The development group is from fields of medical oncology, clinical oncology, radiology, pathology, uveal melanoma science, and patient representation."
"The purpose of this guideline update is to reassess and update recommendations in the prior guideline from 2016 on the appropriate management of patients with uveal melanoma. [...] An enhancement in methodology included adding levels of evidence and strength of recommendations. [...] The recommendations represent evidence-based standards of care agreed to by a large multidisciplinary group of healthcare professionals."
These are the first and only treatments approved by the FDA for ocular melanoma to date:
>> FDA Announcement: "On January 25, 2022, the [U.S.] Food and Drug Administration approved tebentafusp-tebn (Kimmtrak, Immunocore Limited), a bispecific gp100 peptide-HLA-directed CD3 T cell engager, for HLA-A*02:01-positive adult patients with unresectable or metastatic uveal melanoma." KIMMTRAK website and their "Considering KIMMTRAK" brochure (Sept. 2024).
>> FDA Announcement: "On August 14, 2023, the [U.S.] Food and Drug Administration approved HEPZATO KIT (melphalan for Injection/Hepatic Delivery System) containing melphalan (HEPZATO, Delcath Systems, Inc.) as a liver-directed treatment for adult patients with uveal melanoma with unresectable hepatic metastases affecting less than 50% of the liver." HEPZATO KIT website and their FAQs.
See EyeMelanoma.org's Clinical Trials Information webpage for ocular melanoma treatments in the clinical studies stage.
Tests that may be conducted during eye exams for ocular melanoma or separately to check for metastases:
Explanations from American Cancer Society
Learn about the role of each eye imaging test: "1) At baseline to aid in diagnosis, identify risk factors for malignant transformation, and provide measurements for treatment planning and 2) at follow-up to assess treatment response, identify recurrence, and detect treatable complications." View video (Presenter: Dr. Heinrich Heimann, OcuMel UK webinar, 30 minutes, September 2021).
Uveal Melanoma Tumor Testing
DecisionDx-UM (Gene Expression Profile) Test — "It determines the unique activity of a set of 15 genes [in the uveal melanoma tumor. ...] This test can tell you whether your eye tumor falls into one of three classes, identifying the statistical risk of metastasis over the next five years. [...] Results are being used to develop personalized monitoring plans based on a patient’s metastatic risk." (IMPORTANT: If you are interested in this test, you must inform your ocular oncologist for planning purposes. For this test, the tumor biopsy must be done BEFORE any radiation therapy.)
These additional uveal melanoma tests can be ordered and run with the above test using the same single biopsy:
These tests are further discussed in an interview with Castle Biosciences' Dr. Katherina Alsina (20-minute video; May 27, 2022; Presented by A Cure in Sight)
Uveal Melanoma Tumor Testing
Uveal Melanoma Prognostic Genetic Test — "Multiple methods of testing are used to detect specific genetic abnormalities in eye tumor cells. [...] Genetic results indicate whether your chance of developing metastasis is high or low. Patients and their doctors can use this information to tailor their surveillance and treatment plans." (IMPORTANT: If you are interested in this test, you must inform your ocular oncologist for planning purposes. For this test, the tumor biopsy can be done before any radiation therapy but might not be able to be done after it.)
This test is further discussed in an interview with Impact Genetics' Jamie Jessen (30-minute podcast; August 6, 2020; Presented by A Cure in Sight)
Videos explaining the parts of the eye and where ocular melanoma can develop:
"Basic Anatomy of the Eye" (5-minute overview)
Presenter: Guilherme Neri Pires, MD; June 2020; Presented by UM Cure 2020 Project
"Understanding the Anatomy of the Eye" (40-minute presentation, including Q&A)
Presenter: Guilherme Neri Pires, MD; July 2019; Presented by OcuMel UK
The Dictionary of Cancer Terms database contains more than 9,000 "cancer and biomedical terms defined in non-technical language." Pronunciation of each term is also provided. (Also available in Spanish.) From the National Cancer Institute.
The Drug Dictionary database contains "technical definitions and synonyms for drugs/agents used to treat patients with cancer. Each drug entry includes links to check for clinical trials." From the National Cancer Institute.
New information added to this webpage: September 30, 2024
Links to all external sites re-verified on this webpage: September 30, 2024
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