MRF-Logo2019-Horizontal-RGB
Just joined the fight!
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.

Just joined the fight!

› Forums › General Melanoma Community › Just joined the fight!

  • Post
    • October 9, 2017 at 7:10 pm
    Jayming86
    Participant

      I'm 31 with stage 3b, fully resected, NSD.  I'm waiting for my gene testing to determine if targeted therapy is an option.  If not I'm suppose to wait for the nivo vs ipi/nivo trial to start for my adjuvant therapy.  It's been tough to say the least, but I'm pushing on with the fight. My question for y'all is there a possibility that after treatments there won't be a recurrence?  I understand everyone is different, and my chances of recurrence are high.  I just want to hear if there is a story of such a situation.  Also, how long should I wait for the nivo vs ipi/nivo trial?  Should I just do the yervoy since I can do it now?

    Viewing 1 reply thread
    • Replies
        • October 9, 2017 at 7:53 pm
        ed williams
        Participant

          Hi Jayming86, here is a link from one of the leading Melanoma specialist on adjuvant Ipi vs nivo, data is from last month so hot off the presses!!! http://www.onclive.com/conference-coverage/esmo-2017/nivolumab-superior-to-ipilimumab-as-adjuvant-therapy-for-stage-iiiiv-resected-melanoma

            • October 10, 2017 at 12:41 am
            sea8star
            Participant

              Hey OP,

              There is definitely a chance that you avoid recurrance but it is good to see that you're preparing for your risks.  The difference between these BMS immunotherapies in terms of survival in the adjuvant setting is only slight, and weakly supported by the data, but the side effects can be very different so I would talk about that carefully with your doctor and not really stress toooo much about which adjuvant treatment you jump into in terms of these big survival data studies

              .

            • October 10, 2017 at 2:35 am
            Threefitty
            Participant

              Get used to reading all the trial info on CT.org. You will usually find that you have a "shelf life" as an eligible patient after your resection. Sometimes short.

              I was in your shoes earlier this year.  (wasn't offered gene testing option)  I defered on yervoy (A/K/A standard of care at 3b) and did get into a CT where I am guessing I am on Opdivo. The wait was around 12-15 weeks, IIRC. I do not regret it. First, Opdivo does perform better than Yervoy. (if that's what I am getting) Second, the side effect profile is better. Of course this is luck of the draw. At the time, there were not a lot of open trials, so I travel from Ft. Lauderdale to Dallas frequently, and am fortunate to have family and support in just the right place. Point is, I might have defered treatment, traveled, and all for the same drug. (3 arm CT)  Still wanted to do it, because I had the same attitude as the title you gave your post.  I think you want any chance to pull a combo arm.

                • October 10, 2017 at 3:26 pm
                Jayming86
                Participant

                  Did you have surgery to remove lymph nodes?  How long after surgery did you start treatments?

                  • October 10, 2017 at 5:33 pm
                  obtu.bt
                  Participant
                    Hi Jayming,
                    I am in stage 3 and had complete lenf node removal then started ipi + radiation 1 month after surgery and going together with them
              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.

              Popular Topics