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.

Scan Results, sorry had posted anonymous accidently

Forums General Melanoma Community Scan Results, sorry had posted anonymous accidently

  • Post

      I had 5 combo nivo/ipi starting 06/2016 and then 52 doses of nivo ending 08/2018 at which time I had been NED for 1 year. I decided to stop treatments then due to it seems they are finding out continued treatment after 1 year of NED may make no difference. I had my second set of scans last week and still NED. I will continue to get scans at 8 weeks for now. I thought side effects may taper off but I can see no change at this point and myscans did show severe increase in joint degeneration since the last scan 8 weeks ago.

    Viewing 1 reply thread
    • Replies

          Yay to NED still! Joint degeneration.. not so fun. I feel like since I stopped treatment all I've been doing is trying to put my joints back together again. No clue if it's related to treatment.. but it sure makes me wonder.. 


            Congrats and sorry!!  So very glad that you remain NED and based on what Weber says in this post…


            …odds are you will stay that way!!!  YAY!!!  Sorry you are still dealing with joint pain and damage.  I know it certainly took years to have my side effects from 2 1/2 years of nivo to gradually diminish….and they still try to rear their ugly head periodically.  However, despite arthralgias, I never developed joint degeneration.  Are you seeing a rheumatologist or orthopedist?  At this point they might be able to offer more help (though you may be doing this already).  Jubes on this forum has had to deal with more than her fair share (as has Julie in So Co) of joint issues…so perhaps some of their posts might be helpful in your search for solutions.

            At any rate…congrats on NED!  I wish you my best.  c

        Viewing 1 reply thread
        • 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.