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Just starting Ipilimumab Clinical Trial for Stage III
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Just starting Ipilimumab Clinical Trial for Stage III

› Forums › General Melanoma Community › Just starting Ipilimumab Clinical Trial for Stage III

  • Post
    • March 18, 2013 at 2:01 pm
    mark1101
    Participant

      I am 1 week in to ipilimumab for stage IIIc melanoma which involved 5 left axillary nodes.  These have been removed and the original site margins have been cleaned as well.  I was curious about others here who are in or were in or are considering entering this trial.  What are your experiences and thoughts?  I am in arm C and received my first infusion of 3mg/kg ipi a week ago.  So far I am feeling good, but feel paranoid waiting for some symptom or another jump up and bite me.  Sometimes our imaginations can be our worst enemies.

      I am 1 week in to ipilimumab for stage IIIc melanoma which involved 5 left axillary nodes.  These have been removed and the original site margins have been cleaned as well.  I was curious about others here who are in or were in or are considering entering this trial.  What are your experiences and thoughts?  I am in arm C and received my first infusion of 3mg/kg ipi a week ago.  So far I am feeling good, but feel paranoid waiting for some symptom or another jump up and bite me.  Sometimes our imaginations can be our worst enemies.

    Viewing 5 reply threads
    • Replies
        • March 18, 2013 at 4:53 pm
        mel123
        Participant

          Hi Mark, we have a lot in common, I had a few cancerous left axillary nodes (i'm IIIb though), am in the same trial, in the same arm. I started in October and I've had all 4 induction infusions so far, and have not had any side effects. I know what you mean about the paranoia of waiting for something to happen! Just try to live your life, while taking note of any changes and letting your doctor know IMMEDIATELY if you do have any symptoms, just in case. After one infusion, I got the flu, and my oncologist wanted to see me, but it wasn't related to the ipi. He did say that I might have been feeling worse because my immune system was boosted and would have a bigger response to the flu/cold bug. And, after another infusion, I ran/walked a half marathon, so it really hasn't had a major effect on me so far 🙂

          My best advice is to just try your hardest not to overthink it, as difficult as that may be. Best of luck to you!

            • March 19, 2013 at 2:02 am
            mark1101
            Participant

              Thanks, Mel.  No marathons for me even pre-melanoma, but it's good to know it truly is possible to get through much of this with little or minor side effects.  Will try your advice and just live each day as normally as I am able.  Good luck through maintenance.

              • March 19, 2013 at 1:48 pm
              mel123
              Participant

                Another thing, whenever I feel tired, I blame it on the ipi and justify taking a nap 🙂 Might as well use something to your advantage right?!

                • March 19, 2013 at 1:48 pm
                mel123
                Participant

                  Another thing, whenever I feel tired, I blame it on the ipi and justify taking a nap 🙂 Might as well use something to your advantage right?!

                  • March 19, 2013 at 1:48 pm
                  mel123
                  Participant

                    Another thing, whenever I feel tired, I blame it on the ipi and justify taking a nap 🙂 Might as well use something to your advantage right?!

                    • March 19, 2013 at 2:02 am
                    mark1101
                    Participant

                      Thanks, Mel.  No marathons for me even pre-melanoma, but it's good to know it truly is possible to get through much of this with little or minor side effects.  Will try your advice and just live each day as normally as I am able.  Good luck through maintenance.

                      • March 19, 2013 at 2:02 am
                      mark1101
                      Participant

                        Thanks, Mel.  No marathons for me even pre-melanoma, but it's good to know it truly is possible to get through much of this with little or minor side effects.  Will try your advice and just live each day as normally as I am able.  Good luck through maintenance.

                      • March 18, 2013 at 4:53 pm
                      mel123
                      Participant

                        Hi Mark, we have a lot in common, I had a few cancerous left axillary nodes (i'm IIIb though), am in the same trial, in the same arm. I started in October and I've had all 4 induction infusions so far, and have not had any side effects. I know what you mean about the paranoia of waiting for something to happen! Just try to live your life, while taking note of any changes and letting your doctor know IMMEDIATELY if you do have any symptoms, just in case. After one infusion, I got the flu, and my oncologist wanted to see me, but it wasn't related to the ipi. He did say that I might have been feeling worse because my immune system was boosted and would have a bigger response to the flu/cold bug. And, after another infusion, I ran/walked a half marathon, so it really hasn't had a major effect on me so far 🙂

                        My best advice is to just try your hardest not to overthink it, as difficult as that may be. Best of luck to you!

                        • March 18, 2013 at 4:53 pm
                        mel123
                        Participant

                          Hi Mark, we have a lot in common, I had a few cancerous left axillary nodes (i'm IIIb though), am in the same trial, in the same arm. I started in October and I've had all 4 induction infusions so far, and have not had any side effects. I know what you mean about the paranoia of waiting for something to happen! Just try to live your life, while taking note of any changes and letting your doctor know IMMEDIATELY if you do have any symptoms, just in case. After one infusion, I got the flu, and my oncologist wanted to see me, but it wasn't related to the ipi. He did say that I might have been feeling worse because my immune system was boosted and would have a bigger response to the flu/cold bug. And, after another infusion, I ran/walked a half marathon, so it really hasn't had a major effect on me so far 🙂

                          My best advice is to just try your hardest not to overthink it, as difficult as that may be. Best of luck to you!

                          • March 18, 2013 at 11:12 pm
                          94z28joe
                          Participant

                            I just finished my 4th infusion today of the same arm/trial. So, far no really problems to note. After my first infusion I caught a stomach bug which I thought was an ippi problem but it was just a stomach bug. Good luck to you on the trial.

                              • March 19, 2013 at 2:17 am
                              mark1101
                              Participant

                                Joe, hope continued success for you.  I won't hold your being a Braves fan against you.

                                • March 19, 2013 at 2:17 am
                                mark1101
                                Participant

                                  Joe, hope continued success for you.  I won't hold your being a Braves fan against you.

                                  • March 19, 2013 at 2:17 am
                                  mark1101
                                  Participant

                                    Joe, hope continued success for you.  I won't hold your being a Braves fan against you.

                                  • March 18, 2013 at 11:12 pm
                                  94z28joe
                                  Participant

                                    I just finished my 4th infusion today of the same arm/trial. So, far no really problems to note. After my first infusion I caught a stomach bug which I thought was an ippi problem but it was just a stomach bug. Good luck to you on the trial.

                                    • March 18, 2013 at 11:12 pm
                                    94z28joe
                                    Participant

                                      I just finished my 4th infusion today of the same arm/trial. So, far no really problems to note. After my first infusion I caught a stomach bug which I thought was an ippi problem but it was just a stomach bug. Good luck to you on the trial.

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