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Ipi+PD1 Trial Setback
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Ipi+PD1 Trial Setback

› Forums › General Melanoma Community › Ipi+PD1 Trial Setback

  • Post
    • May 2, 2015 at 7:59 pm
    AshleyS
    Participant

      I started the ipi+nivo trial at MD Anderson on March 5. I cruised through the first 2 infusions with only a rash controlled by antihistamines. After the third infusion of the combo (out of 4) I developed a fever. I had blood work and a chest X-ray. It was clear. A couple days later I started to feel nauseous. It spiraled into chills, vomiting, and diarrhea. I took in about 400 calories in 4 days. My husband took me to the local ER. They put me on fluids and after talking to my docs at MDA, I went on steroids. I was bummed, but  I know it was my only choice . 

      It sounds like I will not have my fourth combo infusion. I'm kind of sad about this. I'm hoping that they will continue me on just the anti-PD1.  It sounds like I'll be lucky and get to have a colonoscopy this week! We'll see where this all takes me but it definitely feels like a setback. 

      In the meantime, I'm happy to be feeling better for my husband, my two-year-old, and my five-month-old baby. 

       

       

    Viewing 11 reply threads
    • Replies
        • May 2, 2015 at 9:23 pm
        Mat
        Participant

          Ashley, sorry to hear about this setback.  As you know, even if you need to go off trial, you'll still be able to get  PD-1 after your side effects are under control.

          • May 2, 2015 at 9:23 pm
          Mat
          Participant

            Ashley, sorry to hear about this setback.  As you know, even if you need to go off trial, you'll still be able to get  PD-1 after your side effects are under control.

            • May 2, 2015 at 9:23 pm
            Mat
            Participant

              Ashley, sorry to hear about this setback.  As you know, even if you need to go off trial, you'll still be able to get  PD-1 after your side effects are under control.

              • May 3, 2015 at 2:18 am
              Eileensulliv
              Participant

                So sorry to hear you had a setback! It sounds pretty much exactly like the same response I had after my first infusion! They decided once they weened me off the steroids that I would just receive the pd1. I had the pd1 nearly two weeks ago, and have only had minor, manageable side effects. Otherwise feeling good and ready for my next infusion this Wednesday! I hope you are feeling better and able to get back on track again soon! 

                • May 3, 2015 at 2:18 am
                Eileensulliv
                Participant

                  So sorry to hear you had a setback! It sounds pretty much exactly like the same response I had after my first infusion! They decided once they weened me off the steroids that I would just receive the pd1. I had the pd1 nearly two weeks ago, and have only had minor, manageable side effects. Otherwise feeling good and ready for my next infusion this Wednesday! I hope you are feeling better and able to get back on track again soon! 

                  • May 3, 2015 at 2:18 am
                  Eileensulliv
                  Participant

                    So sorry to hear you had a setback! It sounds pretty much exactly like the same response I had after my first infusion! They decided once they weened me off the steroids that I would just receive the pd1. I had the pd1 nearly two weeks ago, and have only had minor, manageable side effects. Otherwise feeling good and ready for my next infusion this Wednesday! I hope you are feeling better and able to get back on track again soon! 

                    • May 3, 2015 at 2:31 am
                    BrianP
                    Participant

                      Ashley,

                      Hang in there.  I don't think your reaction is too uncommon for the concurrent combo of Ipi and nivo.  3 out of four is not bad.  I suspect they'll get all your side effects under control and start you rolling on the nivo as soon as they can.  Hopefully it will be smooth sailing from here.  Best of luck!

                      Brian

                      • May 3, 2015 at 2:31 am
                      BrianP
                      Participant

                        Ashley,

                        Hang in there.  I don't think your reaction is too uncommon for the concurrent combo of Ipi and nivo.  3 out of four is not bad.  I suspect they'll get all your side effects under control and start you rolling on the nivo as soon as they can.  Hopefully it will be smooth sailing from here.  Best of luck!

                        Brian

                        • May 3, 2015 at 2:31 am
                        BrianP
                        Participant

                          Ashley,

                          Hang in there.  I don't think your reaction is too uncommon for the concurrent combo of Ipi and nivo.  3 out of four is not bad.  I suspect they'll get all your side effects under control and start you rolling on the nivo as soon as they can.  Hopefully it will be smooth sailing from here.  Best of luck!

                          Brian

                          • May 3, 2015 at 2:16 pm
                          Bubbles
                          Participant

                            Hey Ashley,

                            So glad you are feeling better.  I think Brian is right, once your adverse symptoms are controlled you should be able to continue anti-PD1.  We have learned that ipi is the bad boy in these combo trials.  Thought you might be interested in some "old" anti-PD1 data from ASCO of last year.  The first articles relate to Merck's anti-PD1 (Keytruda), but the last article relates to an arm of the trial I am on.  It was one of the first to allow patients who had had adverse side effects from ipi to take the BMS anti-PD1 (Nivo/Opdivo).

                            http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/mk-3475-mercks-anti-pd1-for.html

                            As you can see those folks were not doomed to have bad side effects when they took anti-PD1 alone (even though many had had adverse effects to ipi)  and did have responses.  On top of that, you were being given anti-PD1 and ipi concomitantly, while these ratties were given anti-PD1 with varying amounts of time having passed since their treatment with ipi.  I imagine response rates for folks like you will be even better. 

                            ASCO reports should be interesting and informative this year!  Hang in there.  I wish you my best!  Celeste

                              • May 4, 2015 at 11:17 pm
                              Wheels1994
                              Participant

                                I failed my first trial treatment at MDA which was with CVT and Yervoy.  It was (at that time) a high dose of Yervoy of 10mg.  I developed colitis and it floored me.  Did CVT chemo for 2x and now switched to Keytruda since January and doing great.  No side effects except peripheral neuropathy, presumably from the Cisplatin.  

                                • May 4, 2015 at 11:17 pm
                                Wheels1994
                                Participant

                                  I failed my first trial treatment at MDA which was with CVT and Yervoy.  It was (at that time) a high dose of Yervoy of 10mg.  I developed colitis and it floored me.  Did CVT chemo for 2x and now switched to Keytruda since January and doing great.  No side effects except peripheral neuropathy, presumably from the Cisplatin.  

                                  • May 4, 2015 at 11:17 pm
                                  Wheels1994
                                  Participant

                                    I failed my first trial treatment at MDA which was with CVT and Yervoy.  It was (at that time) a high dose of Yervoy of 10mg.  I developed colitis and it floored me.  Did CVT chemo for 2x and now switched to Keytruda since January and doing great.  No side effects except peripheral neuropathy, presumably from the Cisplatin.  

                                  • May 3, 2015 at 2:16 pm
                                  Bubbles
                                  Participant

                                    Hey Ashley,

                                    So glad you are feeling better.  I think Brian is right, once your adverse symptoms are controlled you should be able to continue anti-PD1.  We have learned that ipi is the bad boy in these combo trials.  Thought you might be interested in some "old" anti-PD1 data from ASCO of last year.  The first articles relate to Merck's anti-PD1 (Keytruda), but the last article relates to an arm of the trial I am on.  It was one of the first to allow patients who had had adverse side effects from ipi to take the BMS anti-PD1 (Nivo/Opdivo).

                                    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/mk-3475-mercks-anti-pd1-for.html

                                    As you can see those folks were not doomed to have bad side effects when they took anti-PD1 alone (even though many had had adverse effects to ipi)  and did have responses.  On top of that, you were being given anti-PD1 and ipi concomitantly, while these ratties were given anti-PD1 with varying amounts of time having passed since their treatment with ipi.  I imagine response rates for folks like you will be even better. 

                                    ASCO reports should be interesting and informative this year!  Hang in there.  I wish you my best!  Celeste

                                    • May 3, 2015 at 2:16 pm
                                    Bubbles
                                    Participant

                                      Hey Ashley,

                                      So glad you are feeling better.  I think Brian is right, once your adverse symptoms are controlled you should be able to continue anti-PD1.  We have learned that ipi is the bad boy in these combo trials.  Thought you might be interested in some "old" anti-PD1 data from ASCO of last year.  The first articles relate to Merck's anti-PD1 (Keytruda), but the last article relates to an arm of the trial I am on.  It was one of the first to allow patients who had had adverse side effects from ipi to take the BMS anti-PD1 (Nivo/Opdivo).

                                      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/mk-3475-mercks-anti-pd1-for.html

                                      As you can see those folks were not doomed to have bad side effects when they took anti-PD1 alone (even though many had had adverse effects to ipi)  and did have responses.  On top of that, you were being given anti-PD1 and ipi concomitantly, while these ratties were given anti-PD1 with varying amounts of time having passed since their treatment with ipi.  I imagine response rates for folks like you will be even better. 

                                      ASCO reports should be interesting and informative this year!  Hang in there.  I wish you my best!  Celeste

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