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Opdivo/Yervoy combo response
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Opdivo/Yervoy combo response

› Forums › General Melanoma Community › Opdivo/Yervoy combo response

  • Post
    • February 11, 2016 at 4:15 am
    [email protected]
    Participant

      My wife is currently Stage IV and has recently completed her fourth round of the combo. At her recent CT scan, about 15 weeks into treatment, she had mixed results; some spots stable in lungs and liver, but several new spots have appeared in the skin. From discussing with our doctors, most response is occurring within the initial 12 weeks or so. I was wondering if anyone here on this combo has 1. had an experience where it took longer for the treatment to have an effect and 2. experienced new spots appearing before the drugs began to work? We are investigating other treatment options and trying to determine how long to continue with the combo before trying something else.

      Appreciate any insight you can share on your experience being on the combo.

    Viewing 5 reply threads
    • Replies
        • February 11, 2016 at 1:15 pm
        JuTMSY4
        Participant

          Hi, I'm sorry you are dealing with this.  As an initial note, I also have a stage IV diagnosis and I don't know how I'd do it without my wife.  People like you are vital to any type of cancer diagnosis.

          As to the combo – I am not on it and I have never tried it.  I will say that I take Pembrolizumab (which is different than Nivo, but it's complicated).  I had growth after trying ipi alone and stable when I switched to Pembro after my ipi course.  Then, after 9 months of Pembro I had significant shrinkage of my soft tissue mets.  

          So, everyone's experience is different and sometimes these drugs take longer than 3 months.  Bubbles, a regular on here, has a blog where she has a ton of info about this and the combo specifically:

          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/

          I would check that out and begin to read up.  

          Good luck – Justin

          • February 11, 2016 at 1:15 pm
          JuTMSY4
          Participant

            Hi, I'm sorry you are dealing with this.  As an initial note, I also have a stage IV diagnosis and I don't know how I'd do it without my wife.  People like you are vital to any type of cancer diagnosis.

            As to the combo – I am not on it and I have never tried it.  I will say that I take Pembrolizumab (which is different than Nivo, but it's complicated).  I had growth after trying ipi alone and stable when I switched to Pembro after my ipi course.  Then, after 9 months of Pembro I had significant shrinkage of my soft tissue mets.  

            So, everyone's experience is different and sometimes these drugs take longer than 3 months.  Bubbles, a regular on here, has a blog where she has a ton of info about this and the combo specifically:

            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/

            I would check that out and begin to read up.  

            Good luck – Justin

              • February 13, 2016 at 3:50 am
              [email protected]
              Participant

                Thanks Justin –

                Glad to hear the Pembro is working for you. We definitely check in to Bubbles blog occasionally too.  My wife's been fighting this for 3 yrs. We haven't seen anything posted or in our research where someone on the combo has experienced new spots at the 12 week screen and the drugs still work. seems like if they are going to work that they will have an impact in the initial 12 weeks of treatment.

                Best of luck to you as well.

                 

                • February 13, 2016 at 3:50 am
                [email protected]
                Participant

                  Thanks Justin –

                  Glad to hear the Pembro is working for you. We definitely check in to Bubbles blog occasionally too.  My wife's been fighting this for 3 yrs. We haven't seen anything posted or in our research where someone on the combo has experienced new spots at the 12 week screen and the drugs still work. seems like if they are going to work that they will have an impact in the initial 12 weeks of treatment.

                  Best of luck to you as well.

                   

                  • April 18, 2016 at 9:56 pm
                  jjw2014
                  Participant

                    Hi 

                    I hope your wife is doing ok.  My sister is fighting Melanoma and is stage iv.  she starts her yervoy opdivo combo in a few weeks.  wanted to find out from you what side effects your wife had in the first round.  I know everyone has different reactions but the more we know the more she will feel at ease.  She unfortunately lost her husband 2 years ago from Melanoma so you can imagine how incredibly draining all this is for she and her two boys.  

                     

                    Information is power.  

                     

                    Thanks so much,

                    Jennifer (concerned sister)

                    • April 18, 2016 at 9:56 pm
                    jjw2014
                    Participant

                      Hi 

                      I hope your wife is doing ok.  My sister is fighting Melanoma and is stage iv.  she starts her yervoy opdivo combo in a few weeks.  wanted to find out from you what side effects your wife had in the first round.  I know everyone has different reactions but the more we know the more she will feel at ease.  She unfortunately lost her husband 2 years ago from Melanoma so you can imagine how incredibly draining all this is for she and her two boys.  

                       

                      Information is power.  

                       

                      Thanks so much,

                      Jennifer (concerned sister)

                      • April 18, 2016 at 9:56 pm
                      jjw2014
                      Participant

                        Hi 

                        I hope your wife is doing ok.  My sister is fighting Melanoma and is stage iv.  she starts her yervoy opdivo combo in a few weeks.  wanted to find out from you what side effects your wife had in the first round.  I know everyone has different reactions but the more we know the more she will feel at ease.  She unfortunately lost her husband 2 years ago from Melanoma so you can imagine how incredibly draining all this is for she and her two boys.  

                         

                        Information is power.  

                         

                        Thanks so much,

                        Jennifer (concerned sister)

                        • February 13, 2016 at 3:50 am
                        [email protected]
                        Participant

                          Thanks Justin –

                          Glad to hear the Pembro is working for you. We definitely check in to Bubbles blog occasionally too.  My wife's been fighting this for 3 yrs. We haven't seen anything posted or in our research where someone on the combo has experienced new spots at the 12 week screen and the drugs still work. seems like if they are going to work that they will have an impact in the initial 12 weeks of treatment.

                          Best of luck to you as well.

                           

                        • February 11, 2016 at 1:15 pm
                        JuTMSY4
                        Participant

                          Hi, I'm sorry you are dealing with this.  As an initial note, I also have a stage IV diagnosis and I don't know how I'd do it without my wife.  People like you are vital to any type of cancer diagnosis.

                          As to the combo – I am not on it and I have never tried it.  I will say that I take Pembrolizumab (which is different than Nivo, but it's complicated).  I had growth after trying ipi alone and stable when I switched to Pembro after my ipi course.  Then, after 9 months of Pembro I had significant shrinkage of my soft tissue mets.  

                          So, everyone's experience is different and sometimes these drugs take longer than 3 months.  Bubbles, a regular on here, has a blog where she has a ton of info about this and the combo specifically:

                          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/

                          I would check that out and begin to read up.  

                          Good luck – Justin

                          • February 12, 2016 at 8:56 pm
                          Scottw
                          Participant

                            Hi, I am on the ipi/nivo regiman now. I have had 2 infusions and have my third in 4 more days. Mine is a total of 4 infusions at 3 weeks apart and thin nivo alone after that depending how scans look. One of my tumors is in front of my right ear at the parotid gland and is easy to see and feel how it is reacting. It has become smaller from what I can tell but I don't know about my large tumor in my abdomen (mesentery). 

                            How have your wifes side effects been? Mostly I have dealt with fatigue, diarrhea controlled with steriod and IV rehydration. I will do anything to get through all 4 treatments.

                            It sound like your wife is handling it like a trooper. That is great.

                            Good luck to you and yours.

                            • February 12, 2016 at 8:56 pm
                            Scottw
                            Participant

                              Hi, I am on the ipi/nivo regiman now. I have had 2 infusions and have my third in 4 more days. Mine is a total of 4 infusions at 3 weeks apart and thin nivo alone after that depending how scans look. One of my tumors is in front of my right ear at the parotid gland and is easy to see and feel how it is reacting. It has become smaller from what I can tell but I don't know about my large tumor in my abdomen (mesentery). 

                              How have your wifes side effects been? Mostly I have dealt with fatigue, diarrhea controlled with steriod and IV rehydration. I will do anything to get through all 4 treatments.

                              It sound like your wife is handling it like a trooper. That is great.

                              Good luck to you and yours.

                                • February 13, 2016 at 3:30 am
                                [email protected]
                                Participant

                                  Hi Scott –

                                  She has had quite a bit of fatigue as well and recently a lot of itching. Had concerns with diarrhea as she participated in an Ipi trial a couple of years ago (much higher dose than current Ipi) and caused her problems but nothing this go around. She is on a small dose of steriod due to SRS on multiple spots on her brain.  We are now exploring additional clinical trial options to determine next steps due to the new spots appearing.

                                  One of our oncologists indicated last week that they had 2 people have a complete response with the combo!

                                  Best of luck to you as well and sending positive thoughts your way!

                                  • February 13, 2016 at 3:30 am
                                  [email protected]
                                  Participant

                                    Hi Scott –

                                    She has had quite a bit of fatigue as well and recently a lot of itching. Had concerns with diarrhea as she participated in an Ipi trial a couple of years ago (much higher dose than current Ipi) and caused her problems but nothing this go around. She is on a small dose of steriod due to SRS on multiple spots on her brain.  We are now exploring additional clinical trial options to determine next steps due to the new spots appearing.

                                    One of our oncologists indicated last week that they had 2 people have a complete response with the combo!

                                    Best of luck to you as well and sending positive thoughts your way!

                                    • February 13, 2016 at 3:30 am
                                    [email protected]
                                    Participant

                                      Hi Scott –

                                      She has had quite a bit of fatigue as well and recently a lot of itching. Had concerns with diarrhea as she participated in an Ipi trial a couple of years ago (much higher dose than current Ipi) and caused her problems but nothing this go around. She is on a small dose of steriod due to SRS on multiple spots on her brain.  We are now exploring additional clinical trial options to determine next steps due to the new spots appearing.

                                      One of our oncologists indicated last week that they had 2 people have a complete response with the combo!

                                      Best of luck to you as well and sending positive thoughts your way!

                                      • April 18, 2016 at 9:58 pm
                                      jjw2014
                                      Participant

                                        Hi Scott,

                                        I hope your'e doing well.    My sister is fighting Melanoma and is stage iv.  she starts her yervoy opdivo combo in a few weeks.  I wanted to find out from you what side effects you had in the first round and how soon they started (hours, days, weeks).   I know everyone has different reactions but the more we know the more she will feel at ease.  She unfortunately lost her husband 2 years ago from Melanoma so you can imagine how incredibly draining all this is for she and her two boys.  

                                         

                                        Information is power.  

                                         

                                        Thanks so much,

                                        Jennifer (concerned sister)

                                        • April 18, 2016 at 9:58 pm
                                        jjw2014
                                        Participant

                                          Hi Scott,

                                          I hope your'e doing well.    My sister is fighting Melanoma and is stage iv.  she starts her yervoy opdivo combo in a few weeks.  I wanted to find out from you what side effects you had in the first round and how soon they started (hours, days, weeks).   I know everyone has different reactions but the more we know the more she will feel at ease.  She unfortunately lost her husband 2 years ago from Melanoma so you can imagine how incredibly draining all this is for she and her two boys.  

                                           

                                          Information is power.  

                                           

                                          Thanks so much,

                                          Jennifer (concerned sister)

                                          • April 18, 2016 at 9:58 pm
                                          jjw2014
                                          Participant

                                            Hi Scott,

                                            I hope your'e doing well.    My sister is fighting Melanoma and is stage iv.  she starts her yervoy opdivo combo in a few weeks.  I wanted to find out from you what side effects you had in the first round and how soon they started (hours, days, weeks).   I know everyone has different reactions but the more we know the more she will feel at ease.  She unfortunately lost her husband 2 years ago from Melanoma so you can imagine how incredibly draining all this is for she and her two boys.  

                                             

                                            Information is power.  

                                             

                                            Thanks so much,

                                            Jennifer (concerned sister)

                                          • February 12, 2016 at 8:56 pm
                                          Scottw
                                          Participant

                                            Hi, I am on the ipi/nivo regiman now. I have had 2 infusions and have my third in 4 more days. Mine is a total of 4 infusions at 3 weeks apart and thin nivo alone after that depending how scans look. One of my tumors is in front of my right ear at the parotid gland and is easy to see and feel how it is reacting. It has become smaller from what I can tell but I don't know about my large tumor in my abdomen (mesentery). 

                                            How have your wifes side effects been? Mostly I have dealt with fatigue, diarrhea controlled with steriod and IV rehydration. I will do anything to get through all 4 treatments.

                                            It sound like your wife is handling it like a trooper. That is great.

                                            Good luck to you and yours.

                                        Viewing 5 reply threads
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