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Next step for Jake???

Forums General Melanoma Community Next step for Jake???

  • Post
    Momofjake
    Participant

      Quick question,

      Jake is finally debating ipi. I felt a little inspired at 4am:) If he is going to give a new treatment a shot, wouldn't a combo be better?? Why not ipi/nivo?? Or what else? He has done: interferon, biochemo, rafiation(tons), pembro, and TAF alone due to side effects. I read his scan report. It's pretty darn good compared to 4 mo ago! It feels like he has a shot at clearing this out even more if he tries a combo. I think he is about to give up, go natural and feel good as long as possible without hospitals and feeling crappy. I want to give him some hope❤️

      Thanks all–Kerri

    Viewing 17 reply threads
    • Replies
        MoiraM
        Participant

          I still believe that Ipi might be easier to 'sell' to him because it is only four infusions, while Nivo is an open-ended commitment. Also is there any reason to believe that Nivo will work given that Pembro did not?

          I am phobic of doctors and hospitals. I was going to refuse treatment. I agreed to Ipi because it only required four infusions. I could commit to four half-days in the day treatment centre.

          I know the chances it may work is low, but, oh, it can be so amazing when it does.

          MoiraM
          Participant

            I still believe that Ipi might be easier to 'sell' to him because it is only four infusions, while Nivo is an open-ended commitment. Also is there any reason to believe that Nivo will work given that Pembro did not?

            I am phobic of doctors and hospitals. I was going to refuse treatment. I agreed to Ipi because it only required four infusions. I could commit to four half-days in the day treatment centre.

            I know the chances it may work is low, but, oh, it can be so amazing when it does.

            MoiraM
            Participant

              I still believe that Ipi might be easier to 'sell' to him because it is only four infusions, while Nivo is an open-ended commitment. Also is there any reason to believe that Nivo will work given that Pembro did not?

              I am phobic of doctors and hospitals. I was going to refuse treatment. I agreed to Ipi because it only required four infusions. I could commit to four half-days in the day treatment centre.

              I know the chances it may work is low, but, oh, it can be so amazing when it does.

              Polymath
              Participant

                Hi Kerri,

                Yes, with recent scans showing a lower tumor burden, and as has been pointed out, failure with pembro alone, the combo seems like the right move.  Higher response rate and lower adverse reactions.  It's really tough for a teen to take the long view.  Whether it be his doctors, peers, or have Jake on this forum directly himself, he needs to hear that this can be beat, and the short-term consequences will be far-outweighed by the resumption of a more normal life with an optimistic future.  We can see this is a tough situation, but the success of the ipi/nivo combo is as good as it gets right now, and without some of the side-effects from prior treatments that has made him treatment adverse.  Best in the battle.

                Gary

                Polymath
                Participant

                  Hi Kerri,

                  Yes, with recent scans showing a lower tumor burden, and as has been pointed out, failure with pembro alone, the combo seems like the right move.  Higher response rate and lower adverse reactions.  It's really tough for a teen to take the long view.  Whether it be his doctors, peers, or have Jake on this forum directly himself, he needs to hear that this can be beat, and the short-term consequences will be far-outweighed by the resumption of a more normal life with an optimistic future.  We can see this is a tough situation, but the success of the ipi/nivo combo is as good as it gets right now, and without some of the side-effects from prior treatments that has made him treatment adverse.  Best in the battle.

                  Gary

                  Polymath
                  Participant

                    Hi Kerri,

                    Yes, with recent scans showing a lower tumor burden, and as has been pointed out, failure with pembro alone, the combo seems like the right move.  Higher response rate and lower adverse reactions.  It's really tough for a teen to take the long view.  Whether it be his doctors, peers, or have Jake on this forum directly himself, he needs to hear that this can be beat, and the short-term consequences will be far-outweighed by the resumption of a more normal life with an optimistic future.  We can see this is a tough situation, but the success of the ipi/nivo combo is as good as it gets right now, and without some of the side-effects from prior treatments that has made him treatment adverse.  Best in the battle.

                    Gary

                    debwray
                    Participant

                      Hi Kerri,

                      So sorry you are in this boat with Jake.

                      IPI nivo sounds like a good option but there seems to be some discussion that 4 doses of IPI rapidly followed by a pd1 may have similar impact but lower side effect burdens and he might be prepared to opt for this if the prospect of the double is over facing given his prior treatment history.

                      So many people seem to have grossly different side effect profiles and I would strongly encourage Jake to give it awhirl and see what it actually means for him. Treatment is not without its downsides but with a good team and a high degree of awareness of when you might need to hit the steroids things may be better than you currently anticipate. I sincerely hope so and wish you both the best as you navigate these tricky decisions.

                      I know it is not always easy to negotiate with teenagers.. my son has a chronic health problem and it took forever to get him diagnosed as he was in denial and I could not get him to the docs whilst at university. He is now managing things so much better having found a health professional he found it easier to communicate with.

                      I hope Jake can find someone similar as thids really seems to help.

                      Hang on in there, he is debating IPI…..that is a longway from a total refusal.

                      Internet hugs to you too,

                      Deb

                      debwray
                      Participant

                        Hi Kerri,

                        So sorry you are in this boat with Jake.

                        IPI nivo sounds like a good option but there seems to be some discussion that 4 doses of IPI rapidly followed by a pd1 may have similar impact but lower side effect burdens and he might be prepared to opt for this if the prospect of the double is over facing given his prior treatment history.

                        So many people seem to have grossly different side effect profiles and I would strongly encourage Jake to give it awhirl and see what it actually means for him. Treatment is not without its downsides but with a good team and a high degree of awareness of when you might need to hit the steroids things may be better than you currently anticipate. I sincerely hope so and wish you both the best as you navigate these tricky decisions.

                        I know it is not always easy to negotiate with teenagers.. my son has a chronic health problem and it took forever to get him diagnosed as he was in denial and I could not get him to the docs whilst at university. He is now managing things so much better having found a health professional he found it easier to communicate with.

                        I hope Jake can find someone similar as thids really seems to help.

                        Hang on in there, he is debating IPI…..that is a longway from a total refusal.

                        Internet hugs to you too,

                        Deb

                        debwray
                        Participant

                          Hi Kerri,

                          So sorry you are in this boat with Jake.

                          IPI nivo sounds like a good option but there seems to be some discussion that 4 doses of IPI rapidly followed by a pd1 may have similar impact but lower side effect burdens and he might be prepared to opt for this if the prospect of the double is over facing given his prior treatment history.

                          So many people seem to have grossly different side effect profiles and I would strongly encourage Jake to give it awhirl and see what it actually means for him. Treatment is not without its downsides but with a good team and a high degree of awareness of when you might need to hit the steroids things may be better than you currently anticipate. I sincerely hope so and wish you both the best as you navigate these tricky decisions.

                          I know it is not always easy to negotiate with teenagers.. my son has a chronic health problem and it took forever to get him diagnosed as he was in denial and I could not get him to the docs whilst at university. He is now managing things so much better having found a health professional he found it easier to communicate with.

                          I hope Jake can find someone similar as thids really seems to help.

                          Hang on in there, he is debating IPI…..that is a longway from a total refusal.

                          Internet hugs to you too,

                          Deb

                          Maria C
                          Participant

                            Kerri – congrats on the recent breakthroughs with Jake – a scan that's promising and a crack in his anti-immunotherapy armor…has he read up on the ipi/nivo combo himself? Maybe if he can connect with another young adult who has been an ipi/nivo responder he will be encouraged to go for it??! 

                            Wishing you both courage, strength & a strong gust of optimism!!

                            Maria C
                            Participant

                              Kerri – congrats on the recent breakthroughs with Jake – a scan that's promising and a crack in his anti-immunotherapy armor…has he read up on the ipi/nivo combo himself? Maybe if he can connect with another young adult who has been an ipi/nivo responder he will be encouraged to go for it??! 

                              Wishing you both courage, strength & a strong gust of optimism!!

                              Maria C
                              Participant

                                Kerri – congrats on the recent breakthroughs with Jake – a scan that's promising and a crack in his anti-immunotherapy armor…has he read up on the ipi/nivo combo himself? Maybe if he can connect with another young adult who has been an ipi/nivo responder he will be encouraged to go for it??! 

                                Wishing you both courage, strength & a strong gust of optimism!!

                                Patina
                                Participant

                                  I'd go for ipi/Yervoy and see if gamma knife radiation can be used to treat one or more of the tumors.  There is something called the abscopal effect when two treatments are used together or close together. My Mom had this and her cancer began shrinking really quickly. She has done amazingly well especially considering the amount of cancer she had.

                                  My Mom was 77 years old and VERY active and healthy. Then diagnosed Stage IV in November of 2013. ~18 Tumors on scalp, 1 on the neck, 6 scattered between the lungs, kidney, liver and left adrenal gland. We didn't know it at the time, but she also had 3 brain mets.  And later more brain mets. In all she had 28 brain mets treated and a craniotomy. 

                                  She had Gamma Knife Radiation, December 9, 2013. (8 of 9 brain mets treated. 1 brain met was missed by the radiation oncologist. Would not find this out until April of 2014!) 1st Yervoy infusion, December 12, 2013 2nd Yervoy Infusion on schedule paused Yervoy infusions due to colitis 3rd Yervoy infusion 3rd Week of April 2014 Stopped Yervoy due to colitis. 4th Yervoy infusion NOT GIVEN.  She ended up with 17 brain mets treated in April of 2014 and was clear for about a year when one treated brain met had an occurrence followed by a craniotomy and then 1 more brain met a month later. She has been on Keytruda since September of 2015.

                                  Overall she had some fatigue with Yervoy and got colitis and thrush. She said if anything was going to kill her it would be the thrush.  With Keytruda she did get vitiligo and has a few bumps, but its not bad.

                                  My Mom is now 80, does whatever she wants and really was never really sick during her treatment and did pretty much whatever she wanted to do. – Even if we were a bit freaked out…

                                  Everyone is different and Jake won't know what side effect he will have until he has it. He shouldn't worry about it and hey, if he gets it, its a REALLY GOOD SIGN! And he shouldn't look a gift horse in the mouth.

                                  And my Mom is almost NED now! So, she'd take the vitiligo over feel ill or dying. She's got a bit more to do here yet.

                                  Tell Jake Good Luck for me!

                                   

                                  Patina
                                  Participant

                                    I'd go for ipi/Yervoy and see if gamma knife radiation can be used to treat one or more of the tumors.  There is something called the abscopal effect when two treatments are used together or close together. My Mom had this and her cancer began shrinking really quickly. She has done amazingly well especially considering the amount of cancer she had.

                                    My Mom was 77 years old and VERY active and healthy. Then diagnosed Stage IV in November of 2013. ~18 Tumors on scalp, 1 on the neck, 6 scattered between the lungs, kidney, liver and left adrenal gland. We didn't know it at the time, but she also had 3 brain mets.  And later more brain mets. In all she had 28 brain mets treated and a craniotomy. 

                                    She had Gamma Knife Radiation, December 9, 2013. (8 of 9 brain mets treated. 1 brain met was missed by the radiation oncologist. Would not find this out until April of 2014!) 1st Yervoy infusion, December 12, 2013 2nd Yervoy Infusion on schedule paused Yervoy infusions due to colitis 3rd Yervoy infusion 3rd Week of April 2014 Stopped Yervoy due to colitis. 4th Yervoy infusion NOT GIVEN.  She ended up with 17 brain mets treated in April of 2014 and was clear for about a year when one treated brain met had an occurrence followed by a craniotomy and then 1 more brain met a month later. She has been on Keytruda since September of 2015.

                                    Overall she had some fatigue with Yervoy and got colitis and thrush. She said if anything was going to kill her it would be the thrush.  With Keytruda she did get vitiligo and has a few bumps, but its not bad.

                                    My Mom is now 80, does whatever she wants and really was never really sick during her treatment and did pretty much whatever she wanted to do. – Even if we were a bit freaked out…

                                    Everyone is different and Jake won't know what side effect he will have until he has it. He shouldn't worry about it and hey, if he gets it, its a REALLY GOOD SIGN! And he shouldn't look a gift horse in the mouth.

                                    And my Mom is almost NED now! So, she'd take the vitiligo over feel ill or dying. She's got a bit more to do here yet.

                                    Tell Jake Good Luck for me!

                                     

                                    Patina
                                    Participant

                                      I'd go for ipi/Yervoy and see if gamma knife radiation can be used to treat one or more of the tumors.  There is something called the abscopal effect when two treatments are used together or close together. My Mom had this and her cancer began shrinking really quickly. She has done amazingly well especially considering the amount of cancer she had.

                                      My Mom was 77 years old and VERY active and healthy. Then diagnosed Stage IV in November of 2013. ~18 Tumors on scalp, 1 on the neck, 6 scattered between the lungs, kidney, liver and left adrenal gland. We didn't know it at the time, but she also had 3 brain mets.  And later more brain mets. In all she had 28 brain mets treated and a craniotomy. 

                                      She had Gamma Knife Radiation, December 9, 2013. (8 of 9 brain mets treated. 1 brain met was missed by the radiation oncologist. Would not find this out until April of 2014!) 1st Yervoy infusion, December 12, 2013 2nd Yervoy Infusion on schedule paused Yervoy infusions due to colitis 3rd Yervoy infusion 3rd Week of April 2014 Stopped Yervoy due to colitis. 4th Yervoy infusion NOT GIVEN.  She ended up with 17 brain mets treated in April of 2014 and was clear for about a year when one treated brain met had an occurrence followed by a craniotomy and then 1 more brain met a month later. She has been on Keytruda since September of 2015.

                                      Overall she had some fatigue with Yervoy and got colitis and thrush. She said if anything was going to kill her it would be the thrush.  With Keytruda she did get vitiligo and has a few bumps, but its not bad.

                                      My Mom is now 80, does whatever she wants and really was never really sick during her treatment and did pretty much whatever she wanted to do. – Even if we were a bit freaked out…

                                      Everyone is different and Jake won't know what side effect he will have until he has it. He shouldn't worry about it and hey, if he gets it, its a REALLY GOOD SIGN! And he shouldn't look a gift horse in the mouth.

                                      And my Mom is almost NED now! So, she'd take the vitiligo over feel ill or dying. She's got a bit more to do here yet.

                                      Tell Jake Good Luck for me!

                                       

                                        snow white
                                        Participant

                                          I just want to thank you for posting this.  My Dad is recently diagnosed with 8 brain mets, more than 12 in his spleen, 1 very tiny one in his lower bowel, 1 in upper right thigh.  I have been beside myself scared that we will loose him, he is only 72 and VERY healthy and active with NO symptoms.  Its so awesome to read success stories, it keeps me from letting my mind go to the dark side.

                                          Again thanks and BEST to your Mom!!!!

                                          snow white
                                          Participant

                                            I just want to thank you for posting this.  My Dad is recently diagnosed with 8 brain mets, more than 12 in his spleen, 1 very tiny one in his lower bowel, 1 in upper right thigh.  I have been beside myself scared that we will loose him, he is only 72 and VERY healthy and active with NO symptoms.  Its so awesome to read success stories, it keeps me from letting my mind go to the dark side.

                                            Again thanks and BEST to your Mom!!!!

                                            snow white
                                            Participant

                                              I just want to thank you for posting this.  My Dad is recently diagnosed with 8 brain mets, more than 12 in his spleen, 1 very tiny one in his lower bowel, 1 in upper right thigh.  I have been beside myself scared that we will loose him, he is only 72 and VERY healthy and active with NO symptoms.  Its so awesome to read success stories, it keeps me from letting my mind go to the dark side.

                                              Again thanks and BEST to your Mom!!!!

                                            mofodor
                                            Participant

                                              Hi Kerri,

                                              My wife was diagnosed Stage IV in June 2015. She began with the ipi/ nivo  combo- 3 doses, she was scheduled for 4 doses every two weeks but ultimately the side effects limited the total to 3 and increased the duration an extra month. She has been getting the Novilumab on a two week cycle now for about a year with tremendous results. She also had a successful Gamma Knife procedure after New Years. Though the side effects of the ipi/ nivo combo were rough we couldn't be happier with the way everything is going. Best of luck!

                                              mofodor
                                              Participant

                                                Hi Kerri,

                                                My wife was diagnosed Stage IV in June 2015. She began with the ipi/ nivo  combo- 3 doses, she was scheduled for 4 doses every two weeks but ultimately the side effects limited the total to 3 and increased the duration an extra month. She has been getting the Novilumab on a two week cycle now for about a year with tremendous results. She also had a successful Gamma Knife procedure after New Years. Though the side effects of the ipi/ nivo combo were rough we couldn't be happier with the way everything is going. Best of luck!

                                                mofodor
                                                Participant

                                                  Hi Kerri,

                                                  My wife was diagnosed Stage IV in June 2015. She began with the ipi/ nivo  combo- 3 doses, she was scheduled for 4 doses every two weeks but ultimately the side effects limited the total to 3 and increased the duration an extra month. She has been getting the Novilumab on a two week cycle now for about a year with tremendous results. She also had a successful Gamma Knife procedure after New Years. Though the side effects of the ipi/ nivo combo were rough we couldn't be happier with the way everything is going. Best of luck!

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