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ippi

  • Post
    gregor913
    Participant
      Anyone do ippi for adjuvant care with good results. If so what dosage. It’s either interferon (which I’m like ehh) or yervoy since it’s approved stage 3.
    Viewing 17 reply threads
    • Replies
        mrsaxde
        Participant

          Having tried one dose of Sylatron, and getting so sick I didn't want a second one, and then having done the 4 infusion treatment with Yervoy, although not for adjuvant care, I'd recommend Yervoy. Interferon hasn't been proven to extend your life, and in my case anyway, Yervoy didn't make me very sick at all. The standard itchy rash, and about three weeks of gastric upset and abdominal pain after the treatments were over. With interferon I was in bed for two days after the shot, and didn't feel right for at least a month.

          mrsaxde
          Participant

            Having tried one dose of Sylatron, and getting so sick I didn't want a second one, and then having done the 4 infusion treatment with Yervoy, although not for adjuvant care, I'd recommend Yervoy. Interferon hasn't been proven to extend your life, and in my case anyway, Yervoy didn't make me very sick at all. The standard itchy rash, and about three weeks of gastric upset and abdominal pain after the treatments were over. With interferon I was in bed for two days after the shot, and didn't feel right for at least a month.

            mrsaxde
            Participant

              Having tried one dose of Sylatron, and getting so sick I didn't want a second one, and then having done the 4 infusion treatment with Yervoy, although not for adjuvant care, I'd recommend Yervoy. Interferon hasn't been proven to extend your life, and in my case anyway, Yervoy didn't make me very sick at all. The standard itchy rash, and about three weeks of gastric upset and abdominal pain after the treatments were over. With interferon I was in bed for two days after the shot, and didn't feel right for at least a month.

              Bubbles
              Participant

                I was in a Nivo/Opdivo NED Stage IV arm for 2 1/2 years, starting in 2010 (after brain and lung mets) and remain NED today.  I have not taken ipilimumab/Yervoy but the second article in this post reports on lots of Stage III NED folks who did:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html

                Hope that helps.  Celeste

                Bubbles
                Participant

                  I was in a Nivo/Opdivo NED Stage IV arm for 2 1/2 years, starting in 2010 (after brain and lung mets) and remain NED today.  I have not taken ipilimumab/Yervoy but the second article in this post reports on lots of Stage III NED folks who did:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html

                  Hope that helps.  Celeste

                  Bubbles
                  Participant

                    I was in a Nivo/Opdivo NED Stage IV arm for 2 1/2 years, starting in 2010 (after brain and lung mets) and remain NED today.  I have not taken ipilimumab/Yervoy but the second article in this post reports on lots of Stage III NED folks who did:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/04/ipi-vs-nivo-trial-as-adjuvant-for-stage.html

                    Hope that helps.  Celeste

                    momof4boys
                    Participant
                      I did ipi 3 mg. I was able to do all doses including maintenance doses with no problems at all really. I was very tired the day of but its usually a big day with scans and a lot of walking. I got the itching but was able to control with benadryl. I was scared of ipi just like you and totally dreading Interferon. I was on a trial and got the ipi arm. I’m so glad I did. I haven’t recurred and was stage 3b nodular mel, ulcerated with a depth of at least 4.0. Things can go wrong but it has done some great things in people.
                        gregor913
                        Participant
                          Thank you for this post. It made my anxiety go way down. It’s a tough decision but I think I’m leaning toward the ipi 3mg because interferon has a bad rap and makes you very sick. I feel like all the centers of excellence don’t even use interferon anymore. I don’t think I would be comfortable with the 10mg ipi because of the side effects.
                          gregor913
                          Participant
                            Thank you for this post. It made my anxiety go way down. It’s a tough decision but I think I’m leaning toward the ipi 3mg because interferon has a bad rap and makes you very sick. I feel like all the centers of excellence don’t even use interferon anymore. I don’t think I would be comfortable with the 10mg ipi because of the side effects.
                            gregor913
                            Participant
                              Thank you for this post. It made my anxiety go way down. It’s a tough decision but I think I’m leaning toward the ipi 3mg because interferon has a bad rap and makes you very sick. I feel like all the centers of excellence don’t even use interferon anymore. I don’t think I would be comfortable with the 10mg ipi because of the side effects.
                            momof4boys
                            Participant
                              I did ipi 3 mg. I was able to do all doses including maintenance doses with no problems at all really. I was very tired the day of but its usually a big day with scans and a lot of walking. I got the itching but was able to control with benadryl. I was scared of ipi just like you and totally dreading Interferon. I was on a trial and got the ipi arm. I’m so glad I did. I haven’t recurred and was stage 3b nodular mel, ulcerated with a depth of at least 4.0. Things can go wrong but it has done some great things in people.
                              momof4boys
                              Participant
                                I did ipi 3 mg. I was able to do all doses including maintenance doses with no problems at all really. I was very tired the day of but its usually a big day with scans and a lot of walking. I got the itching but was able to control with benadryl. I was scared of ipi just like you and totally dreading Interferon. I was on a trial and got the ipi arm. I’m so glad I did. I haven’t recurred and was stage 3b nodular mel, ulcerated with a depth of at least 4.0. Things can go wrong but it has done some great things in people.
                                katie1
                                Participant

                                  My husband IIIC (12mm, ulcerated amelanotic nodular) participated in the adjuvant Ipi vs Interferon trial.  He was in the 3mg/kg arm.  He was able to receive the 4 induction doses but did not recieve any of the maintenance doses due to developing hypohysitis.  If you read through this site and Celeste's blog you will find info on side effects and their treatment.  Under the supervision of experienced doctors, the side effects can be managed.  Though endocrinopathies can result in permanent side effects requiring long term hormone replacement, most of the side effects are reversible.  My husband remains NED 29 months after his first infusion of IPI

                                  Wishing you the Best,

                                  Kate

                                  katie1
                                  Participant

                                    My husband IIIC (12mm, ulcerated amelanotic nodular) participated in the adjuvant Ipi vs Interferon trial.  He was in the 3mg/kg arm.  He was able to receive the 4 induction doses but did not recieve any of the maintenance doses due to developing hypohysitis.  If you read through this site and Celeste's blog you will find info on side effects and their treatment.  Under the supervision of experienced doctors, the side effects can be managed.  Though endocrinopathies can result in permanent side effects requiring long term hormone replacement, most of the side effects are reversible.  My husband remains NED 29 months after his first infusion of IPI

                                    Wishing you the Best,

                                    Kate

                                    katie1
                                    Participant

                                      My husband IIIC (12mm, ulcerated amelanotic nodular) participated in the adjuvant Ipi vs Interferon trial.  He was in the 3mg/kg arm.  He was able to receive the 4 induction doses but did not recieve any of the maintenance doses due to developing hypohysitis.  If you read through this site and Celeste's blog you will find info on side effects and their treatment.  Under the supervision of experienced doctors, the side effects can be managed.  Though endocrinopathies can result in permanent side effects requiring long term hormone replacement, most of the side effects are reversible.  My husband remains NED 29 months after his first infusion of IPI

                                      Wishing you the Best,

                                      Kate

                                      Marianne quinn
                                      Participant

                                        My husband was in the ipi vs interferon trial at 10 mg ipi arm. He had 4 infusions and then had a small mets to the liver. He was removed from the trial and had microwave ablation surgery. He is NED and was diagnosed in September 2013. He managed the side effects  the only permanent ones are he has drink lactaid milk and whole grain bread gives him diarrhea. 

                                        Marianne quinn
                                        Participant

                                          My husband was in the ipi vs interferon trial at 10 mg ipi arm. He had 4 infusions and then had a small mets to the liver. He was removed from the trial and had microwave ablation surgery. He is NED and was diagnosed in September 2013. He managed the side effects  the only permanent ones are he has drink lactaid milk and whole grain bread gives him diarrhea. 

                                            gregor913
                                            Participant

                                              Since ippi is approved by the fda now for 3b. Can I get it without a trial? Will the 3mg dose be covered?

                                              gregor913
                                              Participant

                                                Since ippi is approved by the fda now for 3b. Can I get it without a trial? Will the 3mg dose be covered?

                                                gregor913
                                                Participant

                                                  Since ippi is approved by the fda now for 3b. Can I get it without a trial? Will the 3mg dose be covered?

                                                Marianne quinn
                                                Participant

                                                  My husband was in the ipi vs interferon trial at 10 mg ipi arm. He had 4 infusions and then had a small mets to the liver. He was removed from the trial and had microwave ablation surgery. He is NED and was diagnosed in September 2013. He managed the side effects  the only permanent ones are he has drink lactaid milk and whole grain bread gives him diarrhea. 

                                                  gregor913
                                                  Participant

                                                    Since ippi is approved by the fda for 3b. Can I get ippi without being in a trial. Will the 3mg be covered by insurance?

                                                    gregor913
                                                    Participant

                                                      Since ippi is approved by the fda for 3b. Can I get ippi without being in a trial. Will the 3mg be covered by insurance?

                                                      gregor913
                                                      Participant

                                                        Since ippi is approved by the fda for 3b. Can I get ippi without being in a trial. Will the 3mg be covered by insurance?

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