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Stage IV – Taking Yervoy. Dr Says He Does Not Expect Additional Treatment. – NED?
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Stage IV – Taking Yervoy. Dr Says He Does Not Expect Additional Treatment. – NED?

› Forums › General Melanoma Community › Stage IV – Taking Yervoy. Dr Says He Does Not Expect Additional Treatment. – NED?

  • Post
    • February 6, 2014 at 6:14 am
    Patina
    Participant
      My Mom has stage IV and has had 2 infusions. (She also has brain mets that were treated.) So far, the tumors we could see at the beginning of treatment have already disappeared or are much smaller. – It’s been remarkable to watch.

      At the beginning of treatment we discussed with the doctor the next steps in treatment after Yervoy. But this week he said he did not think she would need anything else. I think this means that he thinks she is doing so well that she could have no evidence of disease after treatment.

      I’ve read about people who have NED. Can anyone tell me how this is determined? Is it one or more scans over a period of time?

      Also, does NED mean that they have had a complete response to Yervoy?

      If you have had a complete response or have NED can you tell me if your doctor has spoken to you about themelanoma coming back and what they say?

    Viewing 8 reply threads
    • Replies
        • February 6, 2014 at 7:34 am
        JerryfromFauq
        Participant

          NED means No Evidence of Disease can be seen on the sccans.  As you seem to realize thei is not the same as saying that there are no Melanoma cells left in ones body.  Ned tneds to meqn Completed Response, which again means No Disease can be seen on the scans.  There is a possiblity that in some cases in the future this can be translated into a cure.  Currently Ipi (Yervoy) is too new to say that.  Some cases do provide a long term response.  Currently for IL-2 the researchers say that they haave never seen anyone that was a Complete Responder for over 30 months to IL-2 have a re-occurance.  Hopefully one day this will be true for Complete responders to Ipi.  I hope your Mother is  one of the ones that does not ever have a re-occurance, But Time will tell.  BE VIGILANT!

           

          • February 6, 2014 at 7:34 am
          JerryfromFauq
          Participant

            NED means No Evidence of Disease can be seen on the sccans.  As you seem to realize thei is not the same as saying that there are no Melanoma cells left in ones body.  Ned tneds to meqn Completed Response, which again means No Disease can be seen on the scans.  There is a possiblity that in some cases in the future this can be translated into a cure.  Currently Ipi (Yervoy) is too new to say that.  Some cases do provide a long term response.  Currently for IL-2 the researchers say that they haave never seen anyone that was a Complete Responder for over 30 months to IL-2 have a re-occurance.  Hopefully one day this will be true for Complete responders to Ipi.  I hope your Mother is  one of the ones that does not ever have a re-occurance, But Time will tell.  BE VIGILANT!

             

            • February 6, 2014 at 7:34 am
            JerryfromFauq
            Participant

              NED means No Evidence of Disease can be seen on the sccans.  As you seem to realize thei is not the same as saying that there are no Melanoma cells left in ones body.  Ned tneds to meqn Completed Response, which again means No Disease can be seen on the scans.  There is a possiblity that in some cases in the future this can be translated into a cure.  Currently Ipi (Yervoy) is too new to say that.  Some cases do provide a long term response.  Currently for IL-2 the researchers say that they haave never seen anyone that was a Complete Responder for over 30 months to IL-2 have a re-occurance.  Hopefully one day this will be true for Complete responders to Ipi.  I hope your Mother is  one of the ones that does not ever have a re-occurance, But Time will tell.  BE VIGILANT!

               

              • February 6, 2014 at 2:55 pm
              Gene_S
              Participant

                Hello,

                My husband is NED after being on a clinical trial he started on Ipi (10mg/kg and GM-CSF self injections on 14 days off 7 days) in Mar. 2011 and became NED Oct. of 2012.  He just went off of the trial in Dec. 2013.  His scans are what determined he was NED.  Because he participated in a clinical trial they will monitor him for years.

                Melanoma is so sneaky you never know when it will rear is ugly head and attack but we are hoping this will not happen but each person is so different you just never really know.

                If you want to read more you can check out his profile.

                Judy (loving wife of Gene Stage IV and now NED)

                • February 6, 2014 at 2:55 pm
                Gene_S
                Participant

                  Hello,

                  My husband is NED after being on a clinical trial he started on Ipi (10mg/kg and GM-CSF self injections on 14 days off 7 days) in Mar. 2011 and became NED Oct. of 2012.  He just went off of the trial in Dec. 2013.  His scans are what determined he was NED.  Because he participated in a clinical trial they will monitor him for years.

                  Melanoma is so sneaky you never know when it will rear is ugly head and attack but we are hoping this will not happen but each person is so different you just never really know.

                  If you want to read more you can check out his profile.

                  Judy (loving wife of Gene Stage IV and now NED)

                  • February 6, 2014 at 2:55 pm
                  Gene_S
                  Participant

                    Hello,

                    My husband is NED after being on a clinical trial he started on Ipi (10mg/kg and GM-CSF self injections on 14 days off 7 days) in Mar. 2011 and became NED Oct. of 2012.  He just went off of the trial in Dec. 2013.  His scans are what determined he was NED.  Because he participated in a clinical trial they will monitor him for years.

                    Melanoma is so sneaky you never know when it will rear is ugly head and attack but we are hoping this will not happen but each person is so different you just never really know.

                    If you want to read more you can check out his profile.

                    Judy (loving wife of Gene Stage IV and now NED)

                    • February 6, 2014 at 8:03 pm
                    KYDonna
                    Participant

                      Great to hear that your mom is responding so well to the Yervoy! Hopefully this will mean a long period of NED!! NED is basically what the cancer community used to call remission. It does not necessarily mean that the cancer is cured. I'm not really sure why they stopped using the word remission.

                      Anyway, melanoma is, unfortunately, one of those diseases that can stay away for a short time and come back or stay away for a long time and come back. There just isn't any way to know from patient to patient how long a response will last. And as someone else mentioned, Yervoy, Zelboraf, Tafinlar, and Mekinist are still so new on the market. I think it will be some time before we can really judge how effective these drugs are in the long term.

                      Hope your mom continues to do well on the Yervoy!! :c)

                        • February 6, 2014 at 9:33 pm
                        JerryfromFauq
                        Participant

                          remission   (reh-MIH-shun)  (NIH-)def)

                            A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.

                          NED is the same as complete remission, not just remission.

                          • February 7, 2014 at 1:13 am
                          shonnat
                          Participant

                            Did your mothers brain mets respond to yervoy or where they treated with something else?

                            How many did she have?

                             

                            • February 7, 2014 at 1:13 am
                            shonnat
                            Participant

                              Did your mothers brain mets respond to yervoy or where they treated with something else?

                              How many did she have?

                               

                              • February 7, 2014 at 1:13 am
                              shonnat
                              Participant

                                Did your mothers brain mets respond to yervoy or where they treated with something else?

                                How many did she have?

                                 

                                • February 7, 2014 at 9:38 pm
                                Pink
                                Participant

                                  I have brain mets that were treated now am on Ipi, one dose in another on Feb 11.  I am starting to get diarrhea and some itching. Did you mother make it through 4 treatments

                                  • February 7, 2014 at 9:38 pm
                                  Pink
                                  Participant

                                    I have brain mets that were treated now am on Ipi, one dose in another on Feb 11.  I am starting to get diarrhea and some itching. Did you mother make it through 4 treatments

                                    • February 8, 2014 at 6:55 am
                                    Patina
                                    Participant

                                      My Mother has only had only had 2 infusions.  

                                      After the first infusion a tumor on her neck (size of a your big thumb) shrank by 50% in the first 2 weeks and the tumors on her head all hardened. (She had 18.)  

                                      After the second infusion the tumor on her neck shrank to the size of a sweat pea and the other tumors on her head began shrinking.

                                      She had to delay her 3rd infusion due to colitis.  

                                      The week after what should have been her third infusion some tummors on her head could not be found and including the tumor on her neck which only a week earlier had been the size of a sweat pea.

                                      She is suppose to have her third infusion on the 18th, but I think it will be a week after that due to the fact that it is taking a longer time to get of the steroids for colitis.

                                      • February 8, 2014 at 6:55 am
                                      Patina
                                      Participant

                                        My Mother has only had only had 2 infusions.  

                                        After the first infusion a tumor on her neck (size of a your big thumb) shrank by 50% in the first 2 weeks and the tumors on her head all hardened. (She had 18.)  

                                        After the second infusion the tumor on her neck shrank to the size of a sweat pea and the other tumors on her head began shrinking.

                                        She had to delay her 3rd infusion due to colitis.  

                                        The week after what should have been her third infusion some tummors on her head could not be found and including the tumor on her neck which only a week earlier had been the size of a sweat pea.

                                        She is suppose to have her third infusion on the 18th, but I think it will be a week after that due to the fact that it is taking a longer time to get of the steroids for colitis.

                                        • February 8, 2014 at 6:55 am
                                        Patina
                                        Participant

                                          My Mother has only had only had 2 infusions.  

                                          After the first infusion a tumor on her neck (size of a your big thumb) shrank by 50% in the first 2 weeks and the tumors on her head all hardened. (She had 18.)  

                                          After the second infusion the tumor on her neck shrank to the size of a sweat pea and the other tumors on her head began shrinking.

                                          She had to delay her 3rd infusion due to colitis.  

                                          The week after what should have been her third infusion some tummors on her head could not be found and including the tumor on her neck which only a week earlier had been the size of a sweat pea.

                                          She is suppose to have her third infusion on the 18th, but I think it will be a week after that due to the fact that it is taking a longer time to get of the steroids for colitis.

                                          • February 7, 2014 at 9:38 pm
                                          Pink
                                          Participant

                                            I have brain mets that were treated now am on Ipi, one dose in another on Feb 11.  I am starting to get diarrhea and some itching. Did you mother make it through 4 treatments

                                            • February 8, 2014 at 6:44 am
                                            Patina
                                            Participant

                                              My Mother had gamma knife radiation 4 days before getting Yervoy.  

                                              In the 30 day follow up with the doctor he said things were heading in the right direction.  We then saw a neuro-oncologist. He said he saw some brain mets that were smaller, some were the same and a few were larger.  – Some mets get larger before they get smaller. 

                                              We have another follow up this comming Wednesday.  We are hoping for the best and think her response to Yervoy could really help her here.

                                              • February 8, 2014 at 6:44 am
                                              Patina
                                              Participant

                                                My Mother had gamma knife radiation 4 days before getting Yervoy.  

                                                In the 30 day follow up with the doctor he said things were heading in the right direction.  We then saw a neuro-oncologist. He said he saw some brain mets that were smaller, some were the same and a few were larger.  – Some mets get larger before they get smaller. 

                                                We have another follow up this comming Wednesday.  We are hoping for the best and think her response to Yervoy could really help her here.

                                                • February 8, 2014 at 6:44 am
                                                Patina
                                                Participant

                                                  My Mother had gamma knife radiation 4 days before getting Yervoy.  

                                                  In the 30 day follow up with the doctor he said things were heading in the right direction.  We then saw a neuro-oncologist. He said he saw some brain mets that were smaller, some were the same and a few were larger.  – Some mets get larger before they get smaller. 

                                                  We have another follow up this comming Wednesday.  We are hoping for the best and think her response to Yervoy could really help her here.

                                                  • February 8, 2014 at 11:47 pm
                                                  KYDonna
                                                  Participant

                                                    Thank you, Jerry, for clarifying what NO evidence of disease means!

                                                    • February 8, 2014 at 11:47 pm
                                                    KYDonna
                                                    Participant

                                                      Thank you, Jerry, for clarifying what NO evidence of disease means!

                                                      • February 8, 2014 at 11:47 pm
                                                      KYDonna
                                                      Participant

                                                        Thank you, Jerry, for clarifying what NO evidence of disease means!

                                                        • February 6, 2014 at 9:33 pm
                                                        JerryfromFauq
                                                        Participant

                                                          remission   (reh-MIH-shun)  (NIH-)def)

                                                            A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.

                                                          NED is the same as complete remission, not just remission.

                                                          • February 6, 2014 at 9:33 pm
                                                          JerryfromFauq
                                                          Participant

                                                            remission   (reh-MIH-shun)  (NIH-)def)

                                                              A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.

                                                            NED is the same as complete remission, not just remission.

                                                          • February 6, 2014 at 8:03 pm
                                                          KYDonna
                                                          Participant

                                                            Great to hear that your mom is responding so well to the Yervoy! Hopefully this will mean a long period of NED!! NED is basically what the cancer community used to call remission. It does not necessarily mean that the cancer is cured. I'm not really sure why they stopped using the word remission.

                                                            Anyway, melanoma is, unfortunately, one of those diseases that can stay away for a short time and come back or stay away for a long time and come back. There just isn't any way to know from patient to patient how long a response will last. And as someone else mentioned, Yervoy, Zelboraf, Tafinlar, and Mekinist are still so new on the market. I think it will be some time before we can really judge how effective these drugs are in the long term.

                                                            Hope your mom continues to do well on the Yervoy!! :c)

                                                            • February 6, 2014 at 8:03 pm
                                                            KYDonna
                                                            Participant

                                                              Great to hear that your mom is responding so well to the Yervoy! Hopefully this will mean a long period of NED!! NED is basically what the cancer community used to call remission. It does not necessarily mean that the cancer is cured. I'm not really sure why they stopped using the word remission.

                                                              Anyway, melanoma is, unfortunately, one of those diseases that can stay away for a short time and come back or stay away for a long time and come back. There just isn't any way to know from patient to patient how long a response will last. And as someone else mentioned, Yervoy, Zelboraf, Tafinlar, and Mekinist are still so new on the market. I think it will be some time before we can really judge how effective these drugs are in the long term.

                                                              Hope your mom continues to do well on the Yervoy!! :c)

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