› Forums › General Melanoma Community › Melanoma Focus Group
- This topic has 3 replies, 3 voices, and was last updated 5 months, 1 week ago by Miriam Kadosh.
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- June 30, 2024 at 8:58 pm
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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- July 6, 2024 at 5:20 pm
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
Excellent points for discussion, Judi. Thank you for responding! -
- July 8, 2024 at 3:40 pm
Hi! Please get in touch with me as we are happy to help support or host this forum. [email protected]
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