MRF-Logo2019-Horizontal-RGB
Stage IV or more
REGISTER
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.

Stage IV or more

› Forums › General Melanoma Community › Stage IV or more

  • Post
    • April 22, 2019 at 6:22 pm
    Dympsd
    Participant

      Hello all

      Sometimes I feel like there are not enough "stages" to adequately cover the variation of mets for melanoma patients. My husband is stage IV but the mets are spread throughout his body ( lung, pancreas,liver, kidney,bone), the main bulk in his brain. He is amazing. Recently just decreased Braf/MEK combo due to debilitating side effects and although he cannot walk very well ( combo caused extreme joint pain which left him with residual left leg weakness) he is sleeping and eating great and enjoying getting around with a walking frame and wheelchair ( he is 53). We feel very lucky to have some pain free, nausea free time to spend with family. I am now hopeful we will have lots of time with adjusted treatments and am very grateful for this support group that keeps me sane when things are bad in the middle of the night and I feel alone. Its funny how this roller coaster takes you from feeling helpless and desperate to hopeful and then you worry about being too hopeful. Crazy right? Seriously Im going with hopeful. Well anyway thank you everyone for sharing your journey. I feel like every week I am getting use to a new norm but really hope this one lasts a bit longer as its a pleasant relatively symptom free period and I wish the same fr you on your journey to recovery.

    Viewing 0 reply threads
    • Replies
        • April 23, 2019 at 3:44 pm
        Bubbles
        Participant

          I am glad your husband is having some relief from pain and nausea.  Hopefully, other things will improve soon.  Yes, it is hard to know what to call melanoma awfulness.  However, as Emma Thompson's character in "Wit" noted….."There is no Stage V!"  (A truly wonderful and real story…if you can take it!) So…we roll with what we have though the many horrifying variables so many melanoma patients deal with daily seem woefully unaddressed by their 'stage'.  Hang in there.  Your husband is lucky to have you.  Wishing you both my best.  Celeste

      Viewing 0 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