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Melanoma Focus Group

› Forums › General Melanoma Community › Melanoma Focus Group

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    • June 30, 2024 at 8:58 pm
    F-melanoma
    Participant
      Hi Everyone! I am a stage 3 melanoma warrior since 2009! It’s been quite a ride. The only option for treatment in 2009 was interferon and it had unbearable side effects and melanoma returned shortly after my month of treatment. I’ve had too many surgeries to count, a clinical trial, Imlygic, Opdivo, and I’m currently receiving Yervoy. I’ve been asked to be part of a focus group where one of the questions is what unmet needs and supports does our melanoma community have. Another topic we will discuss is what issues are important to us and what collaborative approaches have any of us had success with in terms of our medical team, insurance, and any pharmaceutical companies. If anyone would care to share I would love our voices heard. This focus group takes place on July 17th. TIA
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    • Replies
        • July 6, 2024 at 5:20 pm
        JudiAU
        Participant
          AIM/MRF do a good job of giving a good overview of stages of melanoma etc. but I wish there was more information about common treatment issues like detailed side effects and how to manage them, and steroid basics. Also, now that people are living longer with previous rare issues doctors are frequently treating radiation necrosis. These issues need to be detailed and updated. I’d also like to see updated survival stats. People seem to think they will either die immediately or everyone lives if they get immunotherapy. There is a lot of nuance that is missing. Melanoma is not a chronic condition but some people need guidance on how to live when they are not dying.
          • July 8, 2024 at 8:35 am
          F-melanoma
          Participant
            Excellent points for discussion, Judi. Thank you for responding!
            • July 8, 2024 at 3:40 pm
            Miriam Kadosh
            Keymaster
              Hi! Please get in touch with me as we are happy to help support or host this forum. [email protected]
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          About the MRF Patient Forum

          The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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