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Ipi/Nivo first infusion side effects
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Ipi/Nivo first infusion side effects

› Forums › General Melanoma Community › Ipi/Nivo first infusion side effects

  • Post
    • March 7, 2016 at 12:07 am
    Squash
    Participant

      Did my first ipi/nivo  infusion on Friday and I woke up today feeling terrible.

      A bit of loose bowel movement and I feel like i got a brick in my stomach and pretty tender around the liver wher i do have quite a few mets.

      On top of that I have extreme fatigue.

      I have been lying around for hours drifting off into space.

      The question i have i guess is should i do anything ?

      It seems like these are quite common side effects

      I am on 4mg of steroids daily as it is but still i am like a space cadet today.

      Any tips or things i should do?

       

       

       

       

       

       

       

    Viewing 11 reply threads
    • Replies
        • March 7, 2016 at 1:32 am
        BrianP
        Participant

          I really didn't experience anything like you are describing and I'm not sure what I would have done if I did.  Doesn't sound too alarming at the time but obviously pay close attention.  Maybe call your oncologist in the morning just to give them an update and see if they have any suggestions.

          I personally think the soreness in the liver may be a good sign.  Let's hope so.

          Brian

          • March 7, 2016 at 1:32 am
          BrianP
          Participant

            I really didn't experience anything like you are describing and I'm not sure what I would have done if I did.  Doesn't sound too alarming at the time but obviously pay close attention.  Maybe call your oncologist in the morning just to give them an update and see if they have any suggestions.

            I personally think the soreness in the liver may be a good sign.  Let's hope so.

            Brian

            • March 7, 2016 at 1:32 am
            BrianP
            Participant

              I really didn't experience anything like you are describing and I'm not sure what I would have done if I did.  Doesn't sound too alarming at the time but obviously pay close attention.  Maybe call your oncologist in the morning just to give them an update and see if they have any suggestions.

              I personally think the soreness in the liver may be a good sign.  Let's hope so.

              Brian

              • March 7, 2016 at 8:17 am
              MoiraM
              Participant

                Have you had ipi on its own before?

                  • March 7, 2016 at 10:30 am
                  Squash
                  Participant

                    No I have never had Ipi before but i have had Nivo before and it didnt affect me like what is happening now.

                    I had a bit of upset stomach with Nivo but no fatigue or anything else much really.

                    I dont mind a few side effects if i get some shrinkage because i am really running out of time.

                     

                     

                     

                     

                    • March 7, 2016 at 9:50 pm
                    MoiraM
                    Participant

                      I asked about the Ipi because my melanoma consultant told me that side effects to the Ipi are unlikely with the first dose. However, I have no experience of Nivo and the two together might act differently.

                      I was also told that if I had to take steroids that would not affect the Ipi working if you are a responder – something about different parts of the immune system being affected. I think the steroids depress the B cell response and you are hoping for an elevated T cell response. However someone on here may know more and correct me.

                      Certainly the Ipi was still working in my system 2 months after my final Ipi treatment and, at that time, I was on 10mg/day prednisolone.

                      The Ipi side effects can be quite servere, so I recommend keeping your doctor up to date.

                      Good luck. I will be thinking of you and hoping that you are a responder.

                       

                      • March 7, 2016 at 9:50 pm
                      MoiraM
                      Participant

                        I asked about the Ipi because my melanoma consultant told me that side effects to the Ipi are unlikely with the first dose. However, I have no experience of Nivo and the two together might act differently.

                        I was also told that if I had to take steroids that would not affect the Ipi working if you are a responder – something about different parts of the immune system being affected. I think the steroids depress the B cell response and you are hoping for an elevated T cell response. However someone on here may know more and correct me.

                        Certainly the Ipi was still working in my system 2 months after my final Ipi treatment and, at that time, I was on 10mg/day prednisolone.

                        The Ipi side effects can be quite servere, so I recommend keeping your doctor up to date.

                        Good luck. I will be thinking of you and hoping that you are a responder.

                         

                        • March 7, 2016 at 9:50 pm
                        MoiraM
                        Participant

                          I asked about the Ipi because my melanoma consultant told me that side effects to the Ipi are unlikely with the first dose. However, I have no experience of Nivo and the two together might act differently.

                          I was also told that if I had to take steroids that would not affect the Ipi working if you are a responder – something about different parts of the immune system being affected. I think the steroids depress the B cell response and you are hoping for an elevated T cell response. However someone on here may know more and correct me.

                          Certainly the Ipi was still working in my system 2 months after my final Ipi treatment and, at that time, I was on 10mg/day prednisolone.

                          The Ipi side effects can be quite servere, so I recommend keeping your doctor up to date.

                          Good luck. I will be thinking of you and hoping that you are a responder.

                           

                          • March 7, 2016 at 10:30 am
                          Squash
                          Participant

                            No I have never had Ipi before but i have had Nivo before and it didnt affect me like what is happening now.

                            I had a bit of upset stomach with Nivo but no fatigue or anything else much really.

                            I dont mind a few side effects if i get some shrinkage because i am really running out of time.

                             

                             

                             

                             

                            • March 7, 2016 at 10:30 am
                            Squash
                            Participant

                              No I have never had Ipi before but i have had Nivo before and it didnt affect me like what is happening now.

                              I had a bit of upset stomach with Nivo but no fatigue or anything else much really.

                              I dont mind a few side effects if i get some shrinkage because i am really running out of time.

                               

                               

                               

                               

                            • March 7, 2016 at 8:17 am
                            MoiraM
                            Participant

                              Have you had ipi on its own before?

                              • March 7, 2016 at 8:17 am
                              MoiraM
                              Participant

                                Have you had ipi on its own before?

                                • March 7, 2016 at 7:11 pm
                                Issy
                                Participant

                                  Hi

                                  Sorry you are  not feeling well.  My brother is on the same treatment and had his first infusion last week.

                                  I saw that you said you were on steroids, check with your doctor, we were told NO steriods during this treatment. Maybe someone else reading can offer some info on that as well.

                                  Just wanted to let you know what we were told.

                                  All the best ! 

                                  Issy

                                    • March 7, 2016 at 8:51 pm
                                    Squash
                                    Participant

                                      I have to take steroids as the risk of inflammation to my neck is too great.

                                      I am doing raditaiton concurrently on the neck.

                                      It might reduce the effectiveness somewhat but i am on a very low steroid dosage.

                                       

                                       

                                       

                                       

                                      • March 7, 2016 at 8:51 pm
                                      Squash
                                      Participant

                                        I have to take steroids as the risk of inflammation to my neck is too great.

                                        I am doing raditaiton concurrently on the neck.

                                        It might reduce the effectiveness somewhat but i am on a very low steroid dosage.

                                         

                                         

                                         

                                         

                                        • March 7, 2016 at 8:51 pm
                                        Squash
                                        Participant

                                          I have to take steroids as the risk of inflammation to my neck is too great.

                                          I am doing raditaiton concurrently on the neck.

                                          It might reduce the effectiveness somewhat but i am on a very low steroid dosage.

                                           

                                           

                                           

                                           

                                          • March 7, 2016 at 10:23 pm
                                          BrianP
                                          Participant

                                            The trial I was on allowed 10 mg of predinsone (steriods) while taking Nivo.  Not sure if that is standard for those not in a trial but I know you can take some.  I think some doctors have concerns the steriods will run counter to what the immunotherapy treatment is trying to do but I believe there have been studies that show it has little to no impact on treatment benefits.

                                            Brian

                                            • March 7, 2016 at 10:23 pm
                                            BrianP
                                            Participant

                                              The trial I was on allowed 10 mg of predinsone (steriods) while taking Nivo.  Not sure if that is standard for those not in a trial but I know you can take some.  I think some doctors have concerns the steriods will run counter to what the immunotherapy treatment is trying to do but I believe there have been studies that show it has little to no impact on treatment benefits.

                                              Brian

                                              • March 7, 2016 at 10:23 pm
                                              BrianP
                                              Participant

                                                The trial I was on allowed 10 mg of predinsone (steriods) while taking Nivo.  Not sure if that is standard for those not in a trial but I know you can take some.  I think some doctors have concerns the steriods will run counter to what the immunotherapy treatment is trying to do but I believe there have been studies that show it has little to no impact on treatment benefits.

                                                Brian

                                              • March 7, 2016 at 7:11 pm
                                              Issy
                                              Participant

                                                Hi

                                                Sorry you are  not feeling well.  My brother is on the same treatment and had his first infusion last week.

                                                I saw that you said you were on steroids, check with your doctor, we were told NO steriods during this treatment. Maybe someone else reading can offer some info on that as well.

                                                Just wanted to let you know what we were told.

                                                All the best ! 

                                                Issy

                                                • March 7, 2016 at 7:11 pm
                                                Issy
                                                Participant

                                                  Hi

                                                  Sorry you are  not feeling well.  My brother is on the same treatment and had his first infusion last week.

                                                  I saw that you said you were on steroids, check with your doctor, we were told NO steriods during this treatment. Maybe someone else reading can offer some info on that as well.

                                                  Just wanted to let you know what we were told.

                                                  All the best ! 

                                                  Issy

                                                  • March 7, 2016 at 11:10 pm
                                                  Maria C
                                                  Participant

                                                    Hi there – it's my understanding that side effects from ipi/nivo is a good sign, as more responders have had side effects than not. But close communication with your oncologist is key to managing the side effects, which can be highly toxic and even debilitating for some. Early and close communication with your doctor reporting any new signs is important in managing the side effects before they get out of hand.

                                                    Sorry you are feeling "off" but have faith this may be a positive sign!

                                                    • March 7, 2016 at 11:10 pm
                                                    Maria C
                                                    Participant

                                                      Hi there – it's my understanding that side effects from ipi/nivo is a good sign, as more responders have had side effects than not. But close communication with your oncologist is key to managing the side effects, which can be highly toxic and even debilitating for some. Early and close communication with your doctor reporting any new signs is important in managing the side effects before they get out of hand.

                                                      Sorry you are feeling "off" but have faith this may be a positive sign!

                                                        • March 8, 2016 at 1:09 am
                                                        Squash
                                                        Participant

                                                          Thank you Maria i am hoping and praying that is the case.

                                                          I got up this morning and basically went back to sleep again.

                                                          Extreme fatigue is how i would describe it along with gasto/stomach/bowel issues.

                                                          I never had any fatigue on the Nivo alonge.

                                                          Thanks for all the input.

                                                           

                                                           

                                                           

                                                          • March 8, 2016 at 1:09 am
                                                          Squash
                                                          Participant

                                                            Thank you Maria i am hoping and praying that is the case.

                                                            I got up this morning and basically went back to sleep again.

                                                            Extreme fatigue is how i would describe it along with gasto/stomach/bowel issues.

                                                            I never had any fatigue on the Nivo alonge.

                                                            Thanks for all the input.

                                                             

                                                             

                                                             

                                                            • March 8, 2016 at 1:09 am
                                                            Squash
                                                            Participant

                                                              Thank you Maria i am hoping and praying that is the case.

                                                              I got up this morning and basically went back to sleep again.

                                                              Extreme fatigue is how i would describe it along with gasto/stomach/bowel issues.

                                                              I never had any fatigue on the Nivo alonge.

                                                              Thanks for all the input.

                                                               

                                                               

                                                               

                                                            • March 7, 2016 at 11:10 pm
                                                            Maria C
                                                            Participant

                                                              Hi there – it's my understanding that side effects from ipi/nivo is a good sign, as more responders have had side effects than not. But close communication with your oncologist is key to managing the side effects, which can be highly toxic and even debilitating for some. Early and close communication with your doctor reporting any new signs is important in managing the side effects before they get out of hand.

                                                              Sorry you are feeling "off" but have faith this may be a positive sign!

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