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More Yervoy questions

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  • Post
    • November 11, 2013 at 1:30 am
    nancyg
    Participant

      My husband will be getting his last dose of Yervoy next week Monday…he has had basically zero side effects… At his last appointment his Dr said… "Next time you come in I want to see a rash or something so we know this is working…."  So we are nervous … It is horrible not knowing what is going on in that body…the weird thing is that a few lumps have popped up… One on his shoulder and two on his stomach.  We do not know what to think !  He has his first CT scan  Dec 13.. After his 4Yervoy treatments to see what is going on… So I guess my question is did any of you have absolutely zero side effects-not even a rash -and the Yervoy worked???         

      Thank you so much…. This is all so scary and frustrating..

      Wishing you all the best,

      Nancy

    Viewing 2 reply threads
    • Replies
        • November 11, 2013 at 2:26 am
        ecc26
        Participant

          I find it so frustrating when I read that doctors keep saying stuff like that. There is no connection between side effects and having Yervoy work. There are many people who do have side effects, but they are just as likely to not have the drug work as they are to have success. There's also plenty of people out there who have few to no side effects and have great success. For some reason they like to focus on skin reactions the most, but there's no connection between side effects of any kind and getting a good response. Try and relax until your scans. I also had a few new bumps show up during my Yervoy treatment, and even a few "new" ones after I finished- only to find out that they weren't really new (they were visible on previous scans) I just couldn't feel them and they swelled enough with the influence of Yervoy to be able to feel for a while. Yervoy can take a while, even after the last dose to "kick in". Try to be patient.

          I'm almost 3 months out from my last dose and they're still trying to decide if it's working well enough or if I need a trial. I've had at least 8 tumors really shrink down well and currently have 5 others that are swollen and inflamed, presumably before shrinking down (we'll see what the next few weeks show).  There's still a lot left to go, but since finishing the doses I've had no new ones pop up and what hasn't shrunk yet seems stable. 

          Hang in there and wait for the scans, aside from feeling the tumors get smaller there really isn't any other way to determine how well or poorly it's working.

           

            • November 11, 2013 at 5:03 pm
            HopefulOne
            Participant

              Hi Nancy,

              My husband's oncologist said there is no rhyme or reason to who gets side effects (it's not age-, gender- or anything related) and not a predictor of if the Yervoy is working or not. You can have tons of side effects and the drug unfortunately not work. And you can have no side effects and the drug works its magic with your immune system. Or you can fall anywhere within that spectrum.

              I agree with the last person who posted that it is frustrating – and almost frightening – when that is what your doctor tells you – most people will just believe it – and perhaps even give up hope.

              Is this doctor a melanoma specialist? If not, you might want to consult after his treatment with one. I think being on this forum and asking questions and educating yourself so you can ask the questions of the doctor is smart on your part.

              Good luck with your journey – I wish you the best.

              Kimberly

              • November 12, 2013 at 12:53 am
              nancyg
              Participant

                Thank you both for your responses … I really appreciate you taking the time to address my concerns..kim… My husband does see a very well respected melanoma specialist..we are just trying to keep the faith and keep on fighting this awful disease… Praying for you and all on this board!!!

                Warm regards,

                Nancy

                 

                • November 12, 2013 at 5:49 pm
                HopefulOne
                Participant

                  Thanks, Nancy. Praying for you both as well.

                  • November 12, 2013 at 5:49 pm
                  HopefulOne
                  Participant

                    Thanks, Nancy. Praying for you both as well.

                    • November 12, 2013 at 5:49 pm
                    HopefulOne
                    Participant

                      Thanks, Nancy. Praying for you both as well.

                      • November 12, 2013 at 12:53 am
                      nancyg
                      Participant

                        Thank you both for your responses … I really appreciate you taking the time to address my concerns..kim… My husband does see a very well respected melanoma specialist..we are just trying to keep the faith and keep on fighting this awful disease… Praying for you and all on this board!!!

                        Warm regards,

                        Nancy

                         

                        • November 12, 2013 at 12:53 am
                        nancyg
                        Participant

                          Thank you both for your responses … I really appreciate you taking the time to address my concerns..kim… My husband does see a very well respected melanoma specialist..we are just trying to keep the faith and keep on fighting this awful disease… Praying for you and all on this board!!!

                          Warm regards,

                          Nancy

                           

                          • November 12, 2013 at 12:53 am
                          nancyg
                          Participant

                            Thank you both for your responses … I really appreciate you taking the time to address my concerns..kim… My husband does see a very well respected melanoma specialist..we are just trying to keep the faith and keep on fighting this awful disease… Praying for you and all on this board!!!

                            Warm regards,

                            Nancy

                             

                            • November 12, 2013 at 12:53 am
                            nancyg
                            Participant

                              Thank you both for your responses … I really appreciate you taking the time to address my concerns..kim… My husband does see a very well respected melanoma specialist..we are just trying to keep the faith and keep on fighting this awful disease… Praying for you and all on this board!!!

                              Warm regards,

                              Nancy

                               

                              • November 12, 2013 at 12:53 am
                              nancyg
                              Participant

                                Thank you both for your responses … I really appreciate you taking the time to address my concerns..kim… My husband does see a very well respected melanoma specialist..we are just trying to keep the faith and keep on fighting this awful disease… Praying for you and all on this board!!!

                                Warm regards,

                                Nancy

                                 

                                • November 11, 2013 at 5:03 pm
                                HopefulOne
                                Participant

                                  Hi Nancy,

                                  My husband's oncologist said there is no rhyme or reason to who gets side effects (it's not age-, gender- or anything related) and not a predictor of if the Yervoy is working or not. You can have tons of side effects and the drug unfortunately not work. And you can have no side effects and the drug works its magic with your immune system. Or you can fall anywhere within that spectrum.

                                  I agree with the last person who posted that it is frustrating – and almost frightening – when that is what your doctor tells you – most people will just believe it – and perhaps even give up hope.

                                  Is this doctor a melanoma specialist? If not, you might want to consult after his treatment with one. I think being on this forum and asking questions and educating yourself so you can ask the questions of the doctor is smart on your part.

                                  Good luck with your journey – I wish you the best.

                                  Kimberly

                                  • November 11, 2013 at 5:03 pm
                                  HopefulOne
                                  Participant

                                    Hi Nancy,

                                    My husband's oncologist said there is no rhyme or reason to who gets side effects (it's not age-, gender- or anything related) and not a predictor of if the Yervoy is working or not. You can have tons of side effects and the drug unfortunately not work. And you can have no side effects and the drug works its magic with your immune system. Or you can fall anywhere within that spectrum.

                                    I agree with the last person who posted that it is frustrating – and almost frightening – when that is what your doctor tells you – most people will just believe it – and perhaps even give up hope.

                                    Is this doctor a melanoma specialist? If not, you might want to consult after his treatment with one. I think being on this forum and asking questions and educating yourself so you can ask the questions of the doctor is smart on your part.

                                    Good luck with your journey – I wish you the best.

                                    Kimberly

                                  • November 11, 2013 at 2:26 am
                                  ecc26
                                  Participant

                                    I find it so frustrating when I read that doctors keep saying stuff like that. There is no connection between side effects and having Yervoy work. There are many people who do have side effects, but they are just as likely to not have the drug work as they are to have success. There's also plenty of people out there who have few to no side effects and have great success. For some reason they like to focus on skin reactions the most, but there's no connection between side effects of any kind and getting a good response. Try and relax until your scans. I also had a few new bumps show up during my Yervoy treatment, and even a few "new" ones after I finished- only to find out that they weren't really new (they were visible on previous scans) I just couldn't feel them and they swelled enough with the influence of Yervoy to be able to feel for a while. Yervoy can take a while, even after the last dose to "kick in". Try to be patient.

                                    I'm almost 3 months out from my last dose and they're still trying to decide if it's working well enough or if I need a trial. I've had at least 8 tumors really shrink down well and currently have 5 others that are swollen and inflamed, presumably before shrinking down (we'll see what the next few weeks show).  There's still a lot left to go, but since finishing the doses I've had no new ones pop up and what hasn't shrunk yet seems stable. 

                                    Hang in there and wait for the scans, aside from feeling the tumors get smaller there really isn't any other way to determine how well or poorly it's working.

                                     

                                    • November 11, 2013 at 2:26 am
                                    ecc26
                                    Participant

                                      I find it so frustrating when I read that doctors keep saying stuff like that. There is no connection between side effects and having Yervoy work. There are many people who do have side effects, but they are just as likely to not have the drug work as they are to have success. There's also plenty of people out there who have few to no side effects and have great success. For some reason they like to focus on skin reactions the most, but there's no connection between side effects of any kind and getting a good response. Try and relax until your scans. I also had a few new bumps show up during my Yervoy treatment, and even a few "new" ones after I finished- only to find out that they weren't really new (they were visible on previous scans) I just couldn't feel them and they swelled enough with the influence of Yervoy to be able to feel for a while. Yervoy can take a while, even after the last dose to "kick in". Try to be patient.

                                      I'm almost 3 months out from my last dose and they're still trying to decide if it's working well enough or if I need a trial. I've had at least 8 tumors really shrink down well and currently have 5 others that are swollen and inflamed, presumably before shrinking down (we'll see what the next few weeks show).  There's still a lot left to go, but since finishing the doses I've had no new ones pop up and what hasn't shrunk yet seems stable. 

                                      Hang in there and wait for the scans, aside from feeling the tumors get smaller there really isn't any other way to determine how well or poorly it's working.

                                       

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