Side effects

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  • Post
    • June 13, 2016 at 5:26 pm
    Aaron
    Participant

      Hey all, been following this board for several months now.  A couple of years ago I was diagnosed with melanoma.  Had a lymphedectomy with only 1 out of 32 lymph nodes showing signs of disease.  It was considered micro metastasis and no other treatment was deemed necessary.  In Feb. I started experiencing slight discomfort (not pain) in my side and pursued more investigation.  They found a lymph node that was enlarged to about the size of a golf ball.  Then I had a CT scan and they discovered a secondary lymph node the size of a marble. I thought to my self this isn't so bad, I'll have surgery and follow up with some sort of therapy and be on my way.  Went to a specialist and it was then discovered that I had faint glimmers of activity in approximately 10 different nodes and it was stated that surgery would not solve my problem.  Labeled stage 4 and signed up for an ippi/nivo combo trial where it is being determined whether or not immunotherapy should be administered before or after BRAF inhibitors.  I was randomized for the Immuno arm (the arm I was hoping for).  Had my first treatment 7 days ago.  I have experienced ZERO side effects (which I realize there is the possibility I may not) but was wondering on average how far out do some symptoms start to occur typically.  Some things I have started experience:  the unpleasant pressure that first occured that made me inverstigate further turned into lower back pain, this back pain in the past week has disappeared since treatment and my side discomfort is even subsiding, I do feel I am more susceptable to overheating but we are also experiencing our first summer heat wave where temps are mid 90s,  That is about it.  Thank you for any comments you might have.  I am not hoping for side effects but at the same time I think experiencing them would give me some relief that I fighting this disease.  On the plus side, since I am not experiencing side effects I am enjoying my summer with my sons. 

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    • Replies
        • June 13, 2016 at 5:32 pm
        Aaron
        Participant

          I also want to state that I question that it is too early for me to feel like I have experienced any healing but at the same time I know the discomfort is gone. Coincidence I hope not and do not want to question any possible miracles. 

          • June 13, 2016 at 5:32 pm
          Aaron
          Participant

            I also want to state that I question that it is too early for me to feel like I have experienced any healing but at the same time I know the discomfort is gone. Coincidence I hope not and do not want to question any possible miracles. 

            • June 13, 2016 at 5:32 pm
            Aaron
            Participant

              I also want to state that I question that it is too early for me to feel like I have experienced any healing but at the same time I know the discomfort is gone. Coincidence I hope not and do not want to question any possible miracles. 

              • June 13, 2016 at 8:18 pm
              MoiraM
              Participant

                I was only treated with Ipi, not the ipi/nivo combination. I was on 3mg/kg, four treatments at 3 week intervals.

                First infusion: zero side effects. Second  infusion: some diarrhoea (no colitis) and possible suggestion of rash. Third infusion: diarrhoea (no colitis) and lots of rash. Fourth infusion:, diarrhoea (still no colitis), rash, severe headaches, zero appetite and major fatigue (turned out to be inflamation of the anterior pituitary, which has led to permanent damage). Six weeks after ipi stopped, more rash and diarrhoea.

                I had a large and a small tumour in adjacent lymph nodes. They both shrunk so much that they no longer can be distinguished by CT scan.

                  • June 13, 2016 at 9:16 pm
                  Aaron
                  Participant

                    This sounds similar to myself as mine was described as being in adjacent lymph nodes. Mine are in the iliac nodes. Thank you for responding. 

                    • June 13, 2016 at 9:16 pm
                    Aaron
                    Participant

                      This sounds similar to myself as mine was described as being in adjacent lymph nodes. Mine are in the iliac nodes. Thank you for responding. 

                      • June 13, 2016 at 9:16 pm
                      Aaron
                      Participant

                        This sounds similar to myself as mine was described as being in adjacent lymph nodes. Mine are in the iliac nodes. Thank you for responding. 

                      • June 13, 2016 at 8:18 pm
                      MoiraM
                      Participant

                        I was only treated with Ipi, not the ipi/nivo combination. I was on 3mg/kg, four treatments at 3 week intervals.

                        First infusion: zero side effects. Second  infusion: some diarrhoea (no colitis) and possible suggestion of rash. Third infusion: diarrhoea (no colitis) and lots of rash. Fourth infusion:, diarrhoea (still no colitis), rash, severe headaches, zero appetite and major fatigue (turned out to be inflamation of the anterior pituitary, which has led to permanent damage). Six weeks after ipi stopped, more rash and diarrhoea.

                        I had a large and a small tumour in adjacent lymph nodes. They both shrunk so much that they no longer can be distinguished by CT scan.

                        • June 13, 2016 at 8:18 pm
                        MoiraM
                        Participant

                          I was only treated with Ipi, not the ipi/nivo combination. I was on 3mg/kg, four treatments at 3 week intervals.

                          First infusion: zero side effects. Second  infusion: some diarrhoea (no colitis) and possible suggestion of rash. Third infusion: diarrhoea (no colitis) and lots of rash. Fourth infusion:, diarrhoea (still no colitis), rash, severe headaches, zero appetite and major fatigue (turned out to be inflamation of the anterior pituitary, which has led to permanent damage). Six weeks after ipi stopped, more rash and diarrhoea.

                          I had a large and a small tumour in adjacent lymph nodes. They both shrunk so much that they no longer can be distinguished by CT scan.

                          • June 13, 2016 at 9:24 pm
                          ed williams
                          Participant

                            Hi Aaron, the first place that I would go is to Bubbles(Celeste) posts and find the link to her blog. She has covered the side effects topic before. Second, I have a couple of links for you, the first one has a good discussion of side effects to Immunotherapy at the 17min mark. https://www.youtube.com/watch?v=Qd9fCi001n0    The second link would be to a presentation from the Melanoma Research Alliance meetings from late 2014. https://www.youtube.com/watch?v=4nV_BxOfvaw   Best wishes!!! Ed

                              • June 13, 2016 at 10:12 pm
                              Aaron
                              Participant

                                Thank you. I really appreciate the second YouTube vid. 

                                • June 13, 2016 at 10:12 pm
                                Aaron
                                Participant

                                  Thank you. I really appreciate the second YouTube vid. 

                                  • June 13, 2016 at 10:12 pm
                                  Aaron
                                  Participant

                                    Thank you. I really appreciate the second YouTube vid. 

                                  • June 13, 2016 at 9:24 pm
                                  ed williams
                                  Participant

                                    Hi Aaron, the first place that I would go is to Bubbles(Celeste) posts and find the link to her blog. She has covered the side effects topic before. Second, I have a couple of links for you, the first one has a good discussion of side effects to Immunotherapy at the 17min mark. https://www.youtube.com/watch?v=Qd9fCi001n0    The second link would be to a presentation from the Melanoma Research Alliance meetings from late 2014. https://www.youtube.com/watch?v=4nV_BxOfvaw   Best wishes!!! Ed

                                    • June 13, 2016 at 9:24 pm
                                    ed williams
                                    Participant

                                      Hi Aaron, the first place that I would go is to Bubbles(Celeste) posts and find the link to her blog. She has covered the side effects topic before. Second, I have a couple of links for you, the first one has a good discussion of side effects to Immunotherapy at the 17min mark. https://www.youtube.com/watch?v=Qd9fCi001n0    The second link would be to a presentation from the Melanoma Research Alliance meetings from late 2014. https://www.youtube.com/watch?v=4nV_BxOfvaw   Best wishes!!! Ed

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