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Ipi not working?

Forums General Melanoma Community Ipi not working?

  • Post
    JoshF
    Participant

      I finished ipi last year and showed a major decrease in tumor size. Then in Feb…scan showed NED. In the meantime most of the side effects…itchiness, fatigue is gone…thyroid issue is still there. Would this mean that the drug has stopped working? I know it sounds silly but we all know the crazy thoughts that run through our head.

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        BrianP
        Participant

          I really wouldn't jump to that conclusion.  I know it's tough not to think the worse with this disease.  I assume you aren't having Ipi infusions now so I wouldn't expect the side effects to continue.  That doesn't mean Ipi has lost it's effectiveness.  I really don't know exactly how Ipi seems to be durable and I'm not sure that even the real smart guys know the answer to that.  In my simple mind I picture that once Ipi allows your immune system to start getting the upper hand on the melanoma that your immune system starts to "learn" how to recognize and defeat the melanoma.  Once your immune system has cracked the code it doesn't need Ipi to fight the melanoma anymore.  The good news is that it has been shown that if the melanoma does return Ipi can work again.  I'm not the smartest guy in the room and I didn't stay at a Holiday Inn Express last night but that's what I believe.  Congrats on the NED.  Hope the thyroid issue is under control.  I had that side effect from Ipi also.

          Brian

          BrianP
          Participant

            I really wouldn't jump to that conclusion.  I know it's tough not to think the worse with this disease.  I assume you aren't having Ipi infusions now so I wouldn't expect the side effects to continue.  That doesn't mean Ipi has lost it's effectiveness.  I really don't know exactly how Ipi seems to be durable and I'm not sure that even the real smart guys know the answer to that.  In my simple mind I picture that once Ipi allows your immune system to start getting the upper hand on the melanoma that your immune system starts to "learn" how to recognize and defeat the melanoma.  Once your immune system has cracked the code it doesn't need Ipi to fight the melanoma anymore.  The good news is that it has been shown that if the melanoma does return Ipi can work again.  I'm not the smartest guy in the room and I didn't stay at a Holiday Inn Express last night but that's what I believe.  Congrats on the NED.  Hope the thyroid issue is under control.  I had that side effect from Ipi also.

            Brian

            BrianP
            Participant

              I really wouldn't jump to that conclusion.  I know it's tough not to think the worse with this disease.  I assume you aren't having Ipi infusions now so I wouldn't expect the side effects to continue.  That doesn't mean Ipi has lost it's effectiveness.  I really don't know exactly how Ipi seems to be durable and I'm not sure that even the real smart guys know the answer to that.  In my simple mind I picture that once Ipi allows your immune system to start getting the upper hand on the melanoma that your immune system starts to "learn" how to recognize and defeat the melanoma.  Once your immune system has cracked the code it doesn't need Ipi to fight the melanoma anymore.  The good news is that it has been shown that if the melanoma does return Ipi can work again.  I'm not the smartest guy in the room and I didn't stay at a Holiday Inn Express last night but that's what I believe.  Congrats on the NED.  Hope the thyroid issue is under control.  I had that side effect from Ipi also.

              Brian

                Tina D
                Participant

                  I agree with Brian… even though he did not stay at a Holiday Inn Express last night…

                  Once our immune systems are kicked in, that is the hope — that it will continue to self-manage the melanoma and it seems that is a part of the reason there are some lasting responses with the newer immune therapies.I am not the smartest crayon, either.. but this is my limited understanding.

                  Tina

                  Tina D
                  Participant

                    I agree with Brian… even though he did not stay at a Holiday Inn Express last night…

                    Once our immune systems are kicked in, that is the hope — that it will continue to self-manage the melanoma and it seems that is a part of the reason there are some lasting responses with the newer immune therapies.I am not the smartest crayon, either.. but this is my limited understanding.

                    Tina

                    Tina D
                    Participant

                      I agree with Brian… even though he did not stay at a Holiday Inn Express last night…

                      Once our immune systems are kicked in, that is the hope — that it will continue to self-manage the melanoma and it seems that is a part of the reason there are some lasting responses with the newer immune therapies.I am not the smartest crayon, either.. but this is my limited understanding.

                      Tina

                    5374brian
                    Participant

                      My research on the IpI is once  you stop taking the infusions the side effects will subside. that in no way indicates that the IPI is not working. IpI is meant to kick start the immunity system, bridge gaps in the immunity system, and cause some inflammation of the tumors so the immunity system will start attacking and fighting the disease on its own. Your doctor can recommend things for the thyroid. Good luck and stay strong and positive. Continue to fight and win. 

                      5374brian
                      Participant

                        My research on the IpI is once  you stop taking the infusions the side effects will subside. that in no way indicates that the IPI is not working. IpI is meant to kick start the immunity system, bridge gaps in the immunity system, and cause some inflammation of the tumors so the immunity system will start attacking and fighting the disease on its own. Your doctor can recommend things for the thyroid. Good luck and stay strong and positive. Continue to fight and win. 

                        5374brian
                        Participant

                          My research on the IpI is once  you stop taking the infusions the side effects will subside. that in no way indicates that the IPI is not working. IpI is meant to kick start the immunity system, bridge gaps in the immunity system, and cause some inflammation of the tumors so the immunity system will start attacking and fighting the disease on its own. Your doctor can recommend things for the thyroid. Good luck and stay strong and positive. Continue to fight and win. 

                          buffcody
                          Participant

                            You are one of a few people I have come across on the Forum lately discussing thyroid issues after ipi.  I lived with mine for at least a couple months before a neurologist unrelated to my ipi treatments had me tested.  After discovering that my thyroid levels were all indicative of hyperthyroidism, I went to an endocrinologist who was very sceptical that this could have anything to do with my ipi treatments.  If there were a relationship, it would be hypothyrodism and not hyper.  He finally diagnosed Graves Disease and I received radioactive iodine a month ago and am waiting for more testing to see where things stand.  My symptoms were relieved by propranalol (Inderal) which I am still receiving.  Major symptoms were tremor and muscle weakness.  My pituitary is no longer producing, and the endocrinologist is not sure, it seems, whether this is related to long-term steriod use (continuing) or the Graves Disease.  In reading your post, I was wondering whether your dysfunction related to ipi was an under or overactivity of the thyroid and what you may have heard about thyroid problems following ipi or seen in your reading.  My oncologist does not doubt that my problems are likely the result of ipi but is not, of course, an endocrinologist.

                            buffcody
                            Participant

                              You are one of a few people I have come across on the Forum lately discussing thyroid issues after ipi.  I lived with mine for at least a couple months before a neurologist unrelated to my ipi treatments had me tested.  After discovering that my thyroid levels were all indicative of hyperthyroidism, I went to an endocrinologist who was very sceptical that this could have anything to do with my ipi treatments.  If there were a relationship, it would be hypothyrodism and not hyper.  He finally diagnosed Graves Disease and I received radioactive iodine a month ago and am waiting for more testing to see where things stand.  My symptoms were relieved by propranalol (Inderal) which I am still receiving.  Major symptoms were tremor and muscle weakness.  My pituitary is no longer producing, and the endocrinologist is not sure, it seems, whether this is related to long-term steriod use (continuing) or the Graves Disease.  In reading your post, I was wondering whether your dysfunction related to ipi was an under or overactivity of the thyroid and what you may have heard about thyroid problems following ipi or seen in your reading.  My oncologist does not doubt that my problems are likely the result of ipi but is not, of course, an endocrinologist.

                                JoshF
                                Participant

                                  Mine is hypothroidism…not producing enough T4 etc… Bloodwork and testing was normal for 2 years prior to starting ipi…

                                  JoshF
                                  Participant

                                    Mine is hypothroidism…not producing enough T4 etc… Bloodwork and testing was normal for 2 years prior to starting ipi…

                                    JoshF
                                    Participant

                                      Mine is hypothroidism…not producing enough T4 etc… Bloodwork and testing was normal for 2 years prior to starting ipi…

                                    buffcody
                                    Participant

                                      You are one of a few people I have come across on the Forum lately discussing thyroid issues after ipi.  I lived with mine for at least a couple months before a neurologist unrelated to my ipi treatments had me tested.  After discovering that my thyroid levels were all indicative of hyperthyroidism, I went to an endocrinologist who was very sceptical that this could have anything to do with my ipi treatments.  If there were a relationship, it would be hypothyrodism and not hyper.  He finally diagnosed Graves Disease and I received radioactive iodine a month ago and am waiting for more testing to see where things stand.  My symptoms were relieved by propranalol (Inderal) which I am still receiving.  Major symptoms were tremor and muscle weakness.  My pituitary is no longer producing, and the endocrinologist is not sure, it seems, whether this is related to long-term steriod use (continuing) or the Graves Disease.  In reading your post, I was wondering whether your dysfunction related to ipi was an under or overactivity of the thyroid and what you may have heard about thyroid problems following ipi or seen in your reading.  My oncologist does not doubt that my problems are likely the result of ipi but is not, of course, an endocrinologist.

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