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JerNYC

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      JerNYC
      Participant

        That is fantastic news and such good timing for the Holidays. Also very encouraging for those of us who have not had success with some of the newer therapies.

        Before I proceeded with my current therapy (Ipi) one of the oncologists I saw recommended this or a similar chemo combo. Can you tell me a little more about the side effects and how manageable they were? Thank you.

        JerNYC
        Participant

          That is fantastic news and such good timing for the Holidays. Also very encouraging for those of us who have not had success with some of the newer therapies.

          Before I proceeded with my current therapy (Ipi) one of the oncologists I saw recommended this or a similar chemo combo. Can you tell me a little more about the side effects and how manageable they were? Thank you.

          JerNYC
          Participant

            That is fantastic news and such good timing for the Holidays. Also very encouraging for those of us who have not had success with some of the newer therapies.

            Before I proceeded with my current therapy (Ipi) one of the oncologists I saw recommended this or a similar chemo combo. Can you tell me a little more about the side effects and how manageable they were? Thank you.

            JerNYC
            Participant

              I have been experiencing very low HGB while on Ipi and am just about to undergo my third blood transfusion in the past 7-8 weeks. The Drs suspect it is internal bleeding, but no one has been able to find the source. I wonder if it is Ipi-related. I also had my HGB collapse while I was on IL-2 earlier this year, but it rectified itself over the following months. This time it is more predictable, falling about 1.5 points every two weeks. I had my last Ipi infusion last week so I'm hoping one way or another things improve.

              JerNYC
              Participant

                I have been experiencing very low HGB while on Ipi and am just about to undergo my third blood transfusion in the past 7-8 weeks. The Drs suspect it is internal bleeding, but no one has been able to find the source. I wonder if it is Ipi-related. I also had my HGB collapse while I was on IL-2 earlier this year, but it rectified itself over the following months. This time it is more predictable, falling about 1.5 points every two weeks. I had my last Ipi infusion last week so I'm hoping one way or another things improve.

                JerNYC
                Participant

                  I have been experiencing very low HGB while on Ipi and am just about to undergo my third blood transfusion in the past 7-8 weeks. The Drs suspect it is internal bleeding, but no one has been able to find the source. I wonder if it is Ipi-related. I also had my HGB collapse while I was on IL-2 earlier this year, but it rectified itself over the following months. This time it is more predictable, falling about 1.5 points every two weeks. I had my last Ipi infusion last week so I'm hoping one way or another things improve.

                  JerNYC
                  Participant

                    Hi Kevin

                    I had a similar experience to Lisa, while I was on anti-PD-1 (the MDX version). I developed a brain met which we addressed with gamma knife. My oncologist indicated it was not uncommon with these monoclonal antibodies to see such "flair". That said, like you I was also taken aback by it all as we don't need these 'diversions' on the road.

                    I did not respond to anti-PD-1 and went on to Ipi (waiting for scans) and I'm three brain MRIs in from the met and things appear ok. I hope you get good results from the CT and that the brain met situation is addressed asap.

                    Finally, with respect to anti-PD-1, two oncologists I have spoken to believe that doing the drugs sequentially offers very synergistic benefits. I found Ipi a bit tough (was knocked around by infusions 3 and 4) but I had zero side effects from the anti-PD-1. So I'm a big fan – even though it didn't seem to work for me. I believe there are now numerous trials open for the non-BMS versions of anti-PD-1 and most don't preclude prior Ipi usage.

                    Best

                    Jer

                    JerNYC
                    Participant

                      Hi Kevin

                      I had a similar experience to Lisa, while I was on anti-PD-1 (the MDX version). I developed a brain met which we addressed with gamma knife. My oncologist indicated it was not uncommon with these monoclonal antibodies to see such "flair". That said, like you I was also taken aback by it all as we don't need these 'diversions' on the road.

                      I did not respond to anti-PD-1 and went on to Ipi (waiting for scans) and I'm three brain MRIs in from the met and things appear ok. I hope you get good results from the CT and that the brain met situation is addressed asap.

                      Finally, with respect to anti-PD-1, two oncologists I have spoken to believe that doing the drugs sequentially offers very synergistic benefits. I found Ipi a bit tough (was knocked around by infusions 3 and 4) but I had zero side effects from the anti-PD-1. So I'm a big fan – even though it didn't seem to work for me. I believe there are now numerous trials open for the non-BMS versions of anti-PD-1 and most don't preclude prior Ipi usage.

                      Best

                      Jer

                      JerNYC
                      Participant

                        Hi Kevin

                        I had a similar experience to Lisa, while I was on anti-PD-1 (the MDX version). I developed a brain met which we addressed with gamma knife. My oncologist indicated it was not uncommon with these monoclonal antibodies to see such "flair". That said, like you I was also taken aback by it all as we don't need these 'diversions' on the road.

                        I did not respond to anti-PD-1 and went on to Ipi (waiting for scans) and I'm three brain MRIs in from the met and things appear ok. I hope you get good results from the CT and that the brain met situation is addressed asap.

                        Finally, with respect to anti-PD-1, two oncologists I have spoken to believe that doing the drugs sequentially offers very synergistic benefits. I found Ipi a bit tough (was knocked around by infusions 3 and 4) but I had zero side effects from the anti-PD-1. So I'm a big fan – even though it didn't seem to work for me. I believe there are now numerous trials open for the non-BMS versions of anti-PD-1 and most don't preclude prior Ipi usage.

                        Best

                        Jer

                        JerNYC
                        Participant

                          Thank you. That is so very helpful.

                          Best holiday wishes to you as well and a long lasting NED for your husband.

                          JerNYC
                          Participant

                            Thank you. That is so very helpful.

                            Best holiday wishes to you as well and a long lasting NED for your husband.

                            JerNYC
                            Participant

                              Thank you. That is so very helpful.

                              Best holiday wishes to you as well and a long lasting NED for your husband.

                              JerNYC
                              Participant

                                Angela,

                                I'm glad you got some answers. I am on the same path as you (Ipi after not responding to MDX-1106). I had been told that these eye symptoms were more common with MDX than with Ipi (I was warned at the outset). I was also told that MDX stays on your receptors for months, so maybe the Ipi on top of the MDX revved up the MDX to cause it? I guess it doesn't really matter as you now have it under control.

                                Best wishes going forward.

                                 

                                J

                                JerNYC
                                Participant

                                  Angela,

                                  I'm glad you got some answers. I am on the same path as you (Ipi after not responding to MDX-1106). I had been told that these eye symptoms were more common with MDX than with Ipi (I was warned at the outset). I was also told that MDX stays on your receptors for months, so maybe the Ipi on top of the MDX revved up the MDX to cause it? I guess it doesn't really matter as you now have it under control.

                                  Best wishes going forward.

                                   

                                  J

                                  JerNYC
                                  Participant

                                    Angela,

                                    I'm glad you got some answers. I am on the same path as you (Ipi after not responding to MDX-1106). I had been told that these eye symptoms were more common with MDX than with Ipi (I was warned at the outset). I was also told that MDX stays on your receptors for months, so maybe the Ipi on top of the MDX revved up the MDX to cause it? I guess it doesn't really matter as you now have it under control.

                                    Best wishes going forward.

                                     

                                    J

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