The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Forever changed – Quality of Life after Melanoma (and how to help) – ASCO 2021

Forums General Melanoma Community Forever changed – Quality of Life after Melanoma (and how to help) – ASCO 2021

  • Post
Viewing 2 reply threads
  • Replies
      tim brown
        Grateful for this, Bubbles.
        I’m starting Ipi/Nivo on Friday so many of these issues are uppermost in my mind
          Hey all, I guess this one hits close to home. When it comes to stage IV melanoma, I was one of the really lucky ones. I was stage IV with just one metastatic tumor and an unknown primary. To date all scans have shown my organs to be clear and have been NED for over three years. That being said, post diagnosis and treatment have been extremely difficult for me. I sailed through treatment with NIVO (until colitis stopped that) working the whole time and never taking much time off. But post treatment not so good. All kinds of phantom side effects from minor ones (dry mouth and eyes) to serious ones (joints, stomach issues, chronic pain and increased anxiety levels) my life is just not what it was and I miss that. And I think the mourning/missing that former life make it worse.

          I stay on this forum and a few others to read and talk to others who have been there, as no one else can seem to relate. Those of you who know my story (first wife had breast cancer, then died of scleroderma and second wife and I both had cancer at the same time in 2018) also know that the last 10 years have been pretty rough. But reading Celeste’s blog and reaching out with questions and giving support to others sure helps. Also, as Les says, having a support system with friends and loved ones who step up and step in makes a huge difference. If you don’t have a support system, talk to your treatment center they might be able to help out, thinking praying and standing by to support all of you as you have supported me the last few years.



          tim brown
            Good on you, Ted (as we say here in England). Thanks for posting and I wish you well


        Viewing 2 reply threads
        • You must be logged in to reply to this topic.
        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.

        The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

        Popular Topics