Ipi/Nivo first infusion side effects
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

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 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 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 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 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 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 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.

         

         

         

Viewing 11 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Popular Topics