Nivolumab/ipilimumab, checkmate 401

Forums General Melanoma Community Nivolumab/ipilimumab, checkmate 401

  • Post
    Sebastian
    Participant
      Hi.
      Can anyone tell me something about this treatment? 4 days ago I get first dose of treatment. I have 25 lumps under my skin. Few are very big. Looks like stones under my skin. For now I don’t have any side effects. Can anyone had same situation? How fast this treatment working, if will be working? How lumps disappear? How the lumps are changing?
      Please, let me know if You had similar story…

      Regads,
      Sebastian

    Viewing 11 reply threads
    • Replies
        Bubbles
        Participant

          Here is some info on how ipi/nivo compares to ipi alone:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/2-year-survival-outcomes-for-ipinivo.html

          Here's a neat chart about time to response:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html

          There's much more on the blog just use the search bubble if interested. Celeste

          Bubbles
          Participant

            Here is some info on how ipi/nivo compares to ipi alone:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/2-year-survival-outcomes-for-ipinivo.html

            Here's a neat chart about time to response:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html

            There's much more on the blog just use the search bubble if interested. Celeste

            Bubbles
            Participant

              Here is some info on how ipi/nivo compares to ipi alone:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/2-year-survival-outcomes-for-ipinivo.html

              Here's a neat chart about time to response:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html

              There's much more on the blog just use the search bubble if interested. Celeste

              Bubbles
              Participant

                One last post. Pretty good response rate to combo even if you have due to side effects:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

                Hope this helps. I wish you well. Celeste

                Bubbles
                Participant

                  One last post. Pretty good response rate to combo even if you have due to side effects:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

                  Hope this helps. I wish you well. Celeste

                    Sebastian
                    Participant
                      Thank You for Your links.
                      Sebastian
                      Sebastian
                      Participant
                        Thank You for Your links.
                        Sebastian
                        Sebastian
                        Participant
                          Thank You for Your links.
                          Sebastian
                        Bubbles
                        Participant

                          One last post. Pretty good response rate to combo even if you have due to side effects:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/asco-2016-nivo-plus-ipi-checkmate-069.html

                          Hope this helps. I wish you well. Celeste

                          debwray
                          Participant

                            Hi,

                            Think I am about 2 weeks behind you assuming mri brain scan is clear.

                            This is one of those difficult questions. Some responses seem to be fairly quick, some have pseudo progression where tumours swell as immune system starts working then start reducing- stable disease with no progression is deemed a response and some seem to have a delayed response more than two months after treatment commencement, and sadly others don't respond.

                            Think you just have to hang in there, try and be patient and wait and see.

                            They reassess at week 12,  so I guess that gives an indication of when a response might be expected– but given disease prior to starting treatment may have progressed for up to 6 weeks ( valid CT scan date to start of treatment)) it would only be at scan 2 the docs can confirm response.. however you are probably able to do a visual check- how about taking some photos say with coins or ruler so you can log the changes ?

                            Best of luck

                            Deb

                            debwray
                            Participant

                              Hi,

                              Think I am about 2 weeks behind you assuming mri brain scan is clear.

                              This is one of those difficult questions. Some responses seem to be fairly quick, some have pseudo progression where tumours swell as immune system starts working then start reducing- stable disease with no progression is deemed a response and some seem to have a delayed response more than two months after treatment commencement, and sadly others don't respond.

                              Think you just have to hang in there, try and be patient and wait and see.

                              They reassess at week 12,  so I guess that gives an indication of when a response might be expected– but given disease prior to starting treatment may have progressed for up to 6 weeks ( valid CT scan date to start of treatment)) it would only be at scan 2 the docs can confirm response.. however you are probably able to do a visual check- how about taking some photos say with coins or ruler so you can log the changes ?

                              Best of luck

                              Deb

                              debwray
                              Participant

                                Hi,

                                Think I am about 2 weeks behind you assuming mri brain scan is clear.

                                This is one of those difficult questions. Some responses seem to be fairly quick, some have pseudo progression where tumours swell as immune system starts working then start reducing- stable disease with no progression is deemed a response and some seem to have a delayed response more than two months after treatment commencement, and sadly others don't respond.

                                Think you just have to hang in there, try and be patient and wait and see.

                                They reassess at week 12,  so I guess that gives an indication of when a response might be expected– but given disease prior to starting treatment may have progressed for up to 6 weeks ( valid CT scan date to start of treatment)) it would only be at scan 2 the docs can confirm response.. however you are probably able to do a visual check- how about taking some photos say with coins or ruler so you can log the changes ?

                                Best of luck

                                Deb

                                Hukill
                                Participant

                                  I just posted my scan results at 14 weeks. I had 7 mets in my lungs, 5 are gone and the other 2 are down to 2.5mm and 2mm. I noticed about the 2nd week it was working because I had developed a sharp pain in my chest about where one of the mets was. About the 2nd week the pain went away. I had a chest scan at 8 weeks and 5 were smaller and 2 were larger which they probably were swollen due to Tcells. I got the rash early in my second week. Side effects are a good sign that your body is reacting to the drugs and they are working. I have been very lucky on side effects. I got the rash for several weeks and it went away but came back later. It has not itched like a lot of people say but it is still there on my arms and upper chest. I ran fever for 6 weeks which was horrible but kept it under control with motrin every 4 hours. I now have a very dry mouth for 5 weeks and dealing with it but still able to work and do normal things. Had fatigue and no appetite the first 4 or 5 weeks but that has gone. I just got my second dose of just opdivo on 10/21. If it works it will show over time, be patient. Good luck!

                                  Hukill
                                  Participant

                                    I just posted my scan results at 14 weeks. I had 7 mets in my lungs, 5 are gone and the other 2 are down to 2.5mm and 2mm. I noticed about the 2nd week it was working because I had developed a sharp pain in my chest about where one of the mets was. About the 2nd week the pain went away. I had a chest scan at 8 weeks and 5 were smaller and 2 were larger which they probably were swollen due to Tcells. I got the rash early in my second week. Side effects are a good sign that your body is reacting to the drugs and they are working. I have been very lucky on side effects. I got the rash for several weeks and it went away but came back later. It has not itched like a lot of people say but it is still there on my arms and upper chest. I ran fever for 6 weeks which was horrible but kept it under control with motrin every 4 hours. I now have a very dry mouth for 5 weeks and dealing with it but still able to work and do normal things. Had fatigue and no appetite the first 4 or 5 weeks but that has gone. I just got my second dose of just opdivo on 10/21. If it works it will show over time, be patient. Good luck!

                                    Hukill
                                    Participant

                                      I just posted my scan results at 14 weeks. I had 7 mets in my lungs, 5 are gone and the other 2 are down to 2.5mm and 2mm. I noticed about the 2nd week it was working because I had developed a sharp pain in my chest about where one of the mets was. About the 2nd week the pain went away. I had a chest scan at 8 weeks and 5 were smaller and 2 were larger which they probably were swollen due to Tcells. I got the rash early in my second week. Side effects are a good sign that your body is reacting to the drugs and they are working. I have been very lucky on side effects. I got the rash for several weeks and it went away but came back later. It has not itched like a lot of people say but it is still there on my arms and upper chest. I ran fever for 6 weeks which was horrible but kept it under control with motrin every 4 hours. I now have a very dry mouth for 5 weeks and dealing with it but still able to work and do normal things. Had fatigue and no appetite the first 4 or 5 weeks but that has gone. I just got my second dose of just opdivo on 10/21. If it works it will show over time, be patient. Good luck!

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