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Stage 3C and they want to do IPI 10 mg

Forums General Melanoma Community Stage 3C and they want to do IPI 10 mg

  • Post
    jpg
    Participant

      Has anyone else done this?  My doc says it is way more dangerous than interferon and I shouldn't do it. But then another says it is better than interferon.  Why is it 3mg for stage 4?

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    • Replies
        geriakt
        Participant
          I did 10mg/kg IPI and 10mg/kg NIVO on a trial stage 3B. Your dr can prescribe 3mg/kg IPI if he chooses. 3mg or 10 mg is at his discretion. Insurance should cover it but ask first.
          Typically if a doctor is pushing Interferon you should ask him if he is getting a commission from the drug company. Yes this happens all the time.
          You should talk directly with ten people that were given Interferon and I would bet all ten would never do it again. There 1000’s of posts on here about not doing Interferon. It will not cure your cancer. It will not prolong your live but it will get you sick as a dog for one year.
          geriakt
          Participant
            I did 10mg/kg IPI and 10mg/kg NIVO on a trial stage 3B. Your dr can prescribe 3mg/kg IPI if he chooses. 3mg or 10 mg is at his discretion. Insurance should cover it but ask first.
            Typically if a doctor is pushing Interferon you should ask him if he is getting a commission from the drug company. Yes this happens all the time.
            You should talk directly with ten people that were given Interferon and I would bet all ten would never do it again. There 1000’s of posts on here about not doing Interferon. It will not cure your cancer. It will not prolong your live but it will get you sick as a dog for one year.
              Janner
              Participant

                10mg is the FDA approved dose.  Clinical trials for adjuvant therapy were run at 10mg and that is why the approval for stage III is 10mg.  But since 3mg is approved for stage IV (based on different trials), doctors MAY prescribe the 3mg in an "off label" protocol.  However, not all doctors will do this nor will all insurances pay for "off label" protocols.  Look up the numbers on Interferon, they aren't good.  IPI isn't great for numbers but it has better numbers than Interferon.  You have to do what makes sense to YOU, no one else!

                Janner
                Participant

                  10mg is the FDA approved dose.  Clinical trials for adjuvant therapy were run at 10mg and that is why the approval for stage III is 10mg.  But since 3mg is approved for stage IV (based on different trials), doctors MAY prescribe the 3mg in an "off label" protocol.  However, not all doctors will do this nor will all insurances pay for "off label" protocols.  Look up the numbers on Interferon, they aren't good.  IPI isn't great for numbers but it has better numbers than Interferon.  You have to do what makes sense to YOU, no one else!

                  Janner
                  Participant

                    10mg is the FDA approved dose.  Clinical trials for adjuvant therapy were run at 10mg and that is why the approval for stage III is 10mg.  But since 3mg is approved for stage IV (based on different trials), doctors MAY prescribe the 3mg in an "off label" protocol.  However, not all doctors will do this nor will all insurances pay for "off label" protocols.  Look up the numbers on Interferon, they aren't good.  IPI isn't great for numbers but it has better numbers than Interferon.  You have to do what makes sense to YOU, no one else!

                  geriakt
                  Participant
                    I did 10mg/kg IPI and 10mg/kg NIVO on a trial stage 3B. Your dr can prescribe 3mg/kg IPI if he chooses. 3mg or 10 mg is at his discretion. Insurance should cover it but ask first.
                    Typically if a doctor is pushing Interferon you should ask him if he is getting a commission from the drug company. Yes this happens all the time.
                    You should talk directly with ten people that were given Interferon and I would bet all ten would never do it again. There 1000’s of posts on here about not doing Interferon. It will not cure your cancer. It will not prolong your live but it will get you sick as a dog for one year.
                    Mamapegela
                    Participant

                      I am stage 3C also and my doctor at University of Michigan (a melanoma specialist) will not prescribe ipi for me.  He, too, states that it is too dangerous when there is not proven active disease.  It is a strange fluke that the FDA has approved the 10mg for stage 3 yet the mg for stage 4.  He would allow me to do interferon although he did not encourage it.  Basically he has recommended the watch and wait approach.

                      I did get a second opinion at MD Anderson and the melanoma specialist that I saw there concurred with my doctor at U of M.  She said that she does give ipi at the 3mg/kg dose to a select few of her stage 3 patients, but said 70% of her collegues do not give ipi to stage 3.  

                      Possibly when more studies are done and more data is available the recommendations will chage.  I have seen many accounts here of stage 3 patients on ipi who have remained NED yet many others who have progressed to stage 4 on ipi, so I think there is really no way to know.

                      Peggy

                      Mamapegela
                      Participant

                        I am stage 3C also and my doctor at University of Michigan (a melanoma specialist) will not prescribe ipi for me.  He, too, states that it is too dangerous when there is not proven active disease.  It is a strange fluke that the FDA has approved the 10mg for stage 3 yet the mg for stage 4.  He would allow me to do interferon although he did not encourage it.  Basically he has recommended the watch and wait approach.

                        I did get a second opinion at MD Anderson and the melanoma specialist that I saw there concurred with my doctor at U of M.  She said that she does give ipi at the 3mg/kg dose to a select few of her stage 3 patients, but said 70% of her collegues do not give ipi to stage 3.  

                        Possibly when more studies are done and more data is available the recommendations will chage.  I have seen many accounts here of stage 3 patients on ipi who have remained NED yet many others who have progressed to stage 4 on ipi, so I think there is really no way to know.

                        Peggy

                        Mamapegela
                        Participant

                          I am stage 3C also and my doctor at University of Michigan (a melanoma specialist) will not prescribe ipi for me.  He, too, states that it is too dangerous when there is not proven active disease.  It is a strange fluke that the FDA has approved the 10mg for stage 3 yet the mg for stage 4.  He would allow me to do interferon although he did not encourage it.  Basically he has recommended the watch and wait approach.

                          I did get a second opinion at MD Anderson and the melanoma specialist that I saw there concurred with my doctor at U of M.  She said that she does give ipi at the 3mg/kg dose to a select few of her stage 3 patients, but said 70% of her collegues do not give ipi to stage 3.  

                          Possibly when more studies are done and more data is available the recommendations will chage.  I have seen many accounts here of stage 3 patients on ipi who have remained NED yet many others who have progressed to stage 4 on ipi, so I think there is really no way to know.

                          Peggy

                          Bubbles
                          Participant

                            There are many things to consider when making this decision. But a study demonstrating prolonged survival in Stage III melanoma patients using ipi as adjuvant was just published: 

                            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/prolonged-survival-in-stage-iii.html

                            For what it's worth. Wishing you all my best. Celeste

                            Bubbles
                            Participant

                              There are many things to consider when making this decision. But a study demonstrating prolonged survival in Stage III melanoma patients using ipi as adjuvant was just published: 

                              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/prolonged-survival-in-stage-iii.html

                              For what it's worth. Wishing you all my best. Celeste

                              Bubbles
                              Participant

                                There are many things to consider when making this decision. But a study demonstrating prolonged survival in Stage III melanoma patients using ipi as adjuvant was just published: 

                                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/10/prolonged-survival-in-stage-iii.html

                                For what it's worth. Wishing you all my best. Celeste

                                ed williams
                                Participant

                                  Hi Anon, for your reading pleasure I will give you a couple of articles that cover why Ipi at 10mg for stage 3. I hope they will be helpfull. Ed   http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(15)70122-1/abstract      https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0571-0

                                  ed williams
                                  Participant

                                    Hi Anon, for your reading pleasure I will give you a couple of articles that cover why Ipi at 10mg for stage 3. I hope they will be helpfull. Ed   http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(15)70122-1/abstract      https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0571-0

                                      ed williams
                                      Participant

                                        Sorry about the first link. If you google search EORTC 18071, you will find articles about the study of Ipi at 10mg/kg for stage 3 folks. Best Wishes!!!Ed

                                        ed williams
                                        Participant

                                          Sorry about the first link. If you google search EORTC 18071, you will find articles about the study of Ipi at 10mg/kg for stage 3 folks. Best Wishes!!!Ed

                                          ed williams
                                          Participant

                                            Sorry about the first link. If you google search EORTC 18071, you will find articles about the study of Ipi at 10mg/kg for stage 3 folks. Best Wishes!!!Ed

                                          ed williams
                                          Participant

                                            Hi Anon, for your reading pleasure I will give you a couple of articles that cover why Ipi at 10mg for stage 3. I hope they will be helpfull. Ed   http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(15)70122-1/abstract      https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-016-0571-0

                                            Polymath
                                            Participant

                                              Hello Anon,

                                              This debate always puzzles me.  On the one hand, interferon, with infusions, and then self-injections over the course of an entire year will yield a virtual 100% rate of adverse reations.  Basically you will be sick with bad flu-like symptoms for the whole year.  Survial statistics are overwheliming.  You will not prolong your life going this route.  Then on the other hand, Yervoy 10mg (or better yet push for 3mg).  You may or may not get serious adverse reations, and if you do, many of them can be treated.  You are done after 4 doses, 3 weeks apart and may get periodic additional infusions several months apart.  Many people such as myself did the 10mg with almost no side-effects whatsoever, although I did not respond.  The folks more likely to respond do seem to suffer more side-effects, but many are now NED, or at least have had a fairly durable response that has bridged a gap to the "next big thing".  You want to just stay alive as breakthrough treatments keep coming.  In the meantime quality of life is much better.  Early stager's are focused on dying.  Once you have survived a while at stage IV you just keep going, looking for that magic bullet, and try to live your life positively rather than focusing on the negative.  Bottom line is doctors who are fixated on interferon appear to be living in the past.  Get new doctors.

                                              Gary

                                              Polymath
                                              Participant

                                                Hello Anon,

                                                This debate always puzzles me.  On the one hand, interferon, with infusions, and then self-injections over the course of an entire year will yield a virtual 100% rate of adverse reations.  Basically you will be sick with bad flu-like symptoms for the whole year.  Survial statistics are overwheliming.  You will not prolong your life going this route.  Then on the other hand, Yervoy 10mg (or better yet push for 3mg).  You may or may not get serious adverse reations, and if you do, many of them can be treated.  You are done after 4 doses, 3 weeks apart and may get periodic additional infusions several months apart.  Many people such as myself did the 10mg with almost no side-effects whatsoever, although I did not respond.  The folks more likely to respond do seem to suffer more side-effects, but many are now NED, or at least have had a fairly durable response that has bridged a gap to the "next big thing".  You want to just stay alive as breakthrough treatments keep coming.  In the meantime quality of life is much better.  Early stager's are focused on dying.  Once you have survived a while at stage IV you just keep going, looking for that magic bullet, and try to live your life positively rather than focusing on the negative.  Bottom line is doctors who are fixated on interferon appear to be living in the past.  Get new doctors.

                                                Gary

                                                Polymath
                                                Participant

                                                  Hello Anon,

                                                  This debate always puzzles me.  On the one hand, interferon, with infusions, and then self-injections over the course of an entire year will yield a virtual 100% rate of adverse reations.  Basically you will be sick with bad flu-like symptoms for the whole year.  Survial statistics are overwheliming.  You will not prolong your life going this route.  Then on the other hand, Yervoy 10mg (or better yet push for 3mg).  You may or may not get serious adverse reations, and if you do, many of them can be treated.  You are done after 4 doses, 3 weeks apart and may get periodic additional infusions several months apart.  Many people such as myself did the 10mg with almost no side-effects whatsoever, although I did not respond.  The folks more likely to respond do seem to suffer more side-effects, but many are now NED, or at least have had a fairly durable response that has bridged a gap to the "next big thing".  You want to just stay alive as breakthrough treatments keep coming.  In the meantime quality of life is much better.  Early stager's are focused on dying.  Once you have survived a while at stage IV you just keep going, looking for that magic bullet, and try to live your life positively rather than focusing on the negative.  Bottom line is doctors who are fixated on interferon appear to be living in the past.  Get new doctors.

                                                  Gary

                                                  sleepyt23
                                                  Participant

                                                    I was Stage 3B, diagnosed November 2014. Both my surgical and medical oncologists recommended that I do not do interferon due to high chance of side effects and low chance of any benefit. They instead recommended that I wait until Yervoy was approved for adjuvant use. 

                                                    Fast foward to this year, and I've had a power port placed and three infusions of 10mg concentration of Yervoy. Only adverse reactions so far have been slight fatigue, body aches, and a little diarrhea for about a week after each infusion. Other than that I have had no problems.

                                                    From what I've read and what I've been told, Yervoy, since it is approved by the FDA, should at least be attempted in patients in an adjuvant setting. If you have adverse reactions, all you have to do is stop getting infusions. Patients have to be very mindful of any new symptoms that arise after infusions. If something comes up, tell your doctor. If it gets unbearable, your doctor will reassess. Most of the side effects of Yervoy, if caught early, are fully reversible.

                                                    sleepyt23
                                                    Participant

                                                      I was Stage 3B, diagnosed November 2014. Both my surgical and medical oncologists recommended that I do not do interferon due to high chance of side effects and low chance of any benefit. They instead recommended that I wait until Yervoy was approved for adjuvant use. 

                                                      Fast foward to this year, and I've had a power port placed and three infusions of 10mg concentration of Yervoy. Only adverse reactions so far have been slight fatigue, body aches, and a little diarrhea for about a week after each infusion. Other than that I have had no problems.

                                                      From what I've read and what I've been told, Yervoy, since it is approved by the FDA, should at least be attempted in patients in an adjuvant setting. If you have adverse reactions, all you have to do is stop getting infusions. Patients have to be very mindful of any new symptoms that arise after infusions. If something comes up, tell your doctor. If it gets unbearable, your doctor will reassess. Most of the side effects of Yervoy, if caught early, are fully reversible.

                                                      sleepyt23
                                                      Participant

                                                        I was Stage 3B, diagnosed November 2014. Both my surgical and medical oncologists recommended that I do not do interferon due to high chance of side effects and low chance of any benefit. They instead recommended that I wait until Yervoy was approved for adjuvant use. 

                                                        Fast foward to this year, and I've had a power port placed and three infusions of 10mg concentration of Yervoy. Only adverse reactions so far have been slight fatigue, body aches, and a little diarrhea for about a week after each infusion. Other than that I have had no problems.

                                                        From what I've read and what I've been told, Yervoy, since it is approved by the FDA, should at least be attempted in patients in an adjuvant setting. If you have adverse reactions, all you have to do is stop getting infusions. Patients have to be very mindful of any new symptoms that arise after infusions. If something comes up, tell your doctor. If it gets unbearable, your doctor will reassess. Most of the side effects of Yervoy, if caught early, are fully reversible.

                                                        Gene_S
                                                        Participant

                                                          My husband did a clinical trial at Stage IV of 10mg/kg of IPI and he did not have adverse effects from it either and he has been NED for over 4 years.

                                                          Each person reacts differently to medications as well as melanoma.

                                                          If you want to read more about his journey check out his profile.

                                                          Judy (loving wife of Gene Stage IV and now NED for over 4 years)

                                                            Tbailey
                                                            Participant

                                                              I am Stage 3 Anal with one groin lymph node. They have suggested the Nivolumab , 4 doses over 8 Weeks.  They also said the Ipi/Nivo . I am healthy and 45 first time ever being sick with more than the flu. 

                                                                I am reading online and Nivo sounds to good to be true. She also suggested Chemo. My Doctor is Dr Amaria at MD Anderson. I am brand new to all of this terminalogy and I am wanting to make the best and right decision. Any help would be much appreciated. 

                                                              Tbailey
                                                              Participant

                                                                I am Stage 3 Anal with one groin lymph node. They have suggested the Nivolumab , 4 doses over 8 Weeks.  They also said the Ipi/Nivo . I am healthy and 45 first time ever being sick with more than the flu. 

                                                                  I am reading online and Nivo sounds to good to be true. She also suggested Chemo. My Doctor is Dr Amaria at MD Anderson. I am brand new to all of this terminalogy and I am wanting to make the best and right decision. Any help would be much appreciated. 

                                                                Tbailey
                                                                Participant

                                                                  I am Stage 3 Anal with one groin lymph node. They have suggested the Nivolumab , 4 doses over 8 Weeks.  They also said the Ipi/Nivo . I am healthy and 45 first time ever being sick with more than the flu. 

                                                                    I am reading online and Nivo sounds to good to be true. She also suggested Chemo. My Doctor is Dr Amaria at MD Anderson. I am brand new to all of this terminalogy and I am wanting to make the best and right decision. Any help would be much appreciated. 

                                                                Gene_S
                                                                Participant

                                                                  My husband did a clinical trial at Stage IV of 10mg/kg of IPI and he did not have adverse effects from it either and he has been NED for over 4 years.

                                                                  Each person reacts differently to medications as well as melanoma.

                                                                  If you want to read more about his journey check out his profile.

                                                                  Judy (loving wife of Gene Stage IV and now NED for over 4 years)

                                                                  Gene_S
                                                                  Participant

                                                                    My husband did a clinical trial at Stage IV of 10mg/kg of IPI and he did not have adverse effects from it either and he has been NED for over 4 years.

                                                                    Each person reacts differently to medications as well as melanoma.

                                                                    If you want to read more about his journey check out his profile.

                                                                    Judy (loving wife of Gene Stage IV and now NED for over 4 years)

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