Ocular Melanoma Patient Guide

Living with Conjunctival Melanoma Please take a moment to review the final tab of this booklet — Living with Ocular Melanoma — for helpful information regarding follow-up care, coping with vision issues and living with monocular vision. Prognosis and Metastases Conjunctival, uveal and cutaneous melanoma are distinct from one another. Therefore, they each require different treatment strategies. While there is no standardized treatment for uveal or conjunctival melanoma, significant advances have been made in our understanding of these rare melanoma subtypes. This has led to novel targeted therapy and immunotherapy approaches. When conjunctival melanoma spreads, it often behaves more closely to cutaneous melanoma in that it usually spreads through the lymph nodes. From there, it has the ability to spread to the lungs, liver, soft tissues, bone and brain. When uveal melanoma spreads, it most often spreads to the liver and doesn’t usually spread through the lymph nodes. Because conjunctival melanoma usually spreads through the lymph system, sentinel lymph node biopsy (SLNB) may be considered and discussed with your treatment team. Risk factors for metastasis include tumor thickness, ulceration and mitotic rate. These are known risk and prognostic factors for cutaneous melanoma and were incorporated into staging criteria. Although there are currently no FDA-approved systemic treatments for conjunctival melanoma that has metastasized, some clinicians recommend treatment with therapies that have been FDA-approved for cutaneous melanoma. In addition, ongoing clinical trials may give patients access to systemic agents before they are approved. • Immunotherapy A type of systemic treatment given to activate a person’s immune system so that it will destroy melanoma cells within the body. Several immunotherapies are FDA-approved for cutaneous melanoma and some are being studied in ocular melanoma. • Targeted Therapy A form of treatment in which drugs are developed with the goal of destroying cancer cells while leaving normal cells intact. These drugs are designed to interfere with the specific molecules, genetic mutations in the tumor itself, that are driving the growth and spread of the tumor. For example, the BRAF mutation, which is found in about 50% of cutaneous melanomas, is also present in about 30% of conjunctival melanomas. Therefore, some clinicians may recommend targeted therapy for the treatment of conjunctival melanoma in which the BRAF mutation has been found. • Chemotherapy Overall, chemotherapy has not been shown to be effective for ocular melanoma. However, it still may be recommended in some cases. Metastatic Treatment of Conjunctival Melanoma

• Clinical Trials Clinical trials should be explored as a treatment option for anyone diagnosed with conjunctival melanoma. Here’s why:  – Trials help physicians determine which patients should receive which drugs in which order (sequence). – Trials may provide access to therapies not yet approved by the FDA but that may be more effective. – Trials are usually (but not always) free to participate in and you may have more diagnostic tests while participating than you otherwise would have during regular treatment. Be sure you understand your health insurance policy and the coverage of the clinical trial so you are fully aware of what is covered and what is not. – You can choose to stop participating in a trial at any time.

Visit www.melanoma.org/clinical-trials to explore clinical trials that may be a good fit for you.

QUESTIONS TO ASK YOUR DOCTOR

> What is my risk of the melanoma spreading? > How will you determine if the cancer has spread? > What is adjuvant therapy?

> Should I consider adjuvant therapy or explore clinical trials? > Do you recommend immunotherapy or targeted therapy? > Do I need scans on a regular basis? If so, what type of scans do you recommend? > Has my melanoma been tested for genetic mutations, such as the BRAF mutation? > What should my follow-up plan be? > Will I be able to continue my normal, daily life? > Should I seek a second opinion?

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