Ipi/ Nivo adverse reactions, hallucinations
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Ipi/ Nivo adverse reactions, hallucinations

› Forums › General Melanoma Community › Ipi/ Nivo adverse reactions, hallucinations

  • Post
    • October 22, 2016 at 12:07 am
    mike.socal
    Participant

         I completed my 3rd infusion of ipi/nivo and about 2 weeks after began having hallucinations and pretty much checked out. Before that it was fatigue,minor rash, but not the more common adverse reactions. My wife took me to the hospital, after they finally told her to bring me in,which was 3 weeks after it began and progressed. I remember very little of it. I was put on Dexamethasone, after a week in the hospital I was released, and now am doing good, no symptons at all, been 2 weeks. Had scans in hospital and they showed response.  NOT SURE MY NEXT MOVE.  Anyone experience these effects?  How long can the treatment be delayed?   And if you delay, did the delay help you with previous effects?  Skip the combo and go to maintenance doses?   I'm hoping if someone has done it these ways, they can please share their experience and results, particulary longer term results.

    Thanks, I really appreciate alll of you and the sharing and caring in this community,    Mike

Viewing 14 reply threads
  • Replies
      • October 22, 2016 at 1:01 am
      BrianP
      Participant

      Mike,

      Can't say I've heard of hallucinations before but can't say I'm surprised.  These are powerful drugs. 

      I have heard of many patients who don't make it through the planned 4 combo infusions due to side effects and just move to the nivo maintenance.  Many if not most continue to do quite well. 

      Good luck to you.  Congrats on the response. 

      Brian

      • October 22, 2016 at 1:01 am
      BrianP
      Participant

      Mike,

      Can't say I've heard of hallucinations before but can't say I'm surprised.  These are powerful drugs. 

      I have heard of many patients who don't make it through the planned 4 combo infusions due to side effects and just move to the nivo maintenance.  Many if not most continue to do quite well. 

      Good luck to you.  Congrats on the response. 

      Brian

      • October 22, 2016 at 1:01 am
      BrianP
      Participant

      Mike,

      Can't say I've heard of hallucinations before but can't say I'm surprised.  These are powerful drugs. 

      I have heard of many patients who don't make it through the planned 4 combo infusions due to side effects and just move to the nivo maintenance.  Many if not most continue to do quite well. 

      Good luck to you.  Congrats on the response. 

      Brian

      • October 22, 2016 at 12:27 pm
      ed williams
      Participant

      Hi Mike, this is a current video talking about toxicity in the combination of Ipi/nivo and how to manage patients. Best Wishes!!! Ed   https://www.youtube.com/watch?v=VCOAk7i9kmU

      • October 22, 2016 at 12:27 pm
      ed williams
      Participant

      Hi Mike, this is a current video talking about toxicity in the combination of Ipi/nivo and how to manage patients. Best Wishes!!! Ed   https://www.youtube.com/watch?v=VCOAk7i9kmU

      • October 22, 2016 at 12:27 pm
      ed williams
      Participant

      Hi Mike, this is a current video talking about toxicity in the combination of Ipi/nivo and how to manage patients. Best Wishes!!! Ed   https://www.youtube.com/watch?v=VCOAk7i9kmU

      • October 24, 2016 at 1:47 pm
      Hukill
      Participant

      I have had the 4 combo doses and just got my 2nd dose of just opdivo. No hallucinations and I have not read any reports or patient stories about having hallucinations. I was given a prescription for dexamethasone but was told not to take it unless I was told to.

      • October 24, 2016 at 1:47 pm
      Hukill
      Participant

      I have had the 4 combo doses and just got my 2nd dose of just opdivo. No hallucinations and I have not read any reports or patient stories about having hallucinations. I was given a prescription for dexamethasone but was told not to take it unless I was told to.

      • October 24, 2016 at 1:47 pm
      Hukill
      Participant

      I have had the 4 combo doses and just got my 2nd dose of just opdivo. No hallucinations and I have not read any reports or patient stories about having hallucinations. I was given a prescription for dexamethasone but was told not to take it unless I was told to.

      • October 29, 2016 at 3:40 pm
      KAF
      Participant

      Hi Mike

      i just started my nivo maintenance yesterday and the nurse gave me a little card with side affects for Nivo to carry with me.  One of them listed hallucinations.  I was surprised to see that but I actually had my appointment after reading your post so it hit me and I wanted to post and let you know.  You should let your doc know that you're having that symptom (along with any other symptoms)

      karen

      • October 29, 2016 at 3:40 pm
      KAF
      Participant

      Hi Mike

      i just started my nivo maintenance yesterday and the nurse gave me a little card with side affects for Nivo to carry with me.  One of them listed hallucinations.  I was surprised to see that but I actually had my appointment after reading your post so it hit me and I wanted to post and let you know.  You should let your doc know that you're having that symptom (along with any other symptoms)

      karen

      • October 29, 2016 at 3:40 pm
      KAF
      Participant

      Hi Mike

      i just started my nivo maintenance yesterday and the nurse gave me a little card with side affects for Nivo to carry with me.  One of them listed hallucinations.  I was surprised to see that but I actually had my appointment after reading your post so it hit me and I wanted to post and let you know.  You should let your doc know that you're having that symptom (along with any other symptoms)

      karen

      • October 29, 2016 at 3:45 pm
      KAF
      Participant

      Hi again

      i should also add that i only made it through 3 doses and one week after the 3rd dose of the ipi/nivo combo my pituitary inflamed and I've been on steroids since to bring it down.  Finally got down to 10mg of prednisone without a headache so we started maintenance yesterday after being down to 10mg for a week.  Had my scans done 12 weeks after my last dose and I'm officially NED.  Personally I think the 4 doses is ideal and the max but for many of us, our bodies react so much that 2 or 3 may be enough.  I think strong side affects mean that your body may have had its fill of the drug so don't be upset if you can't get 4

      • October 29, 2016 at 3:45 pm
      KAF
      Participant

      Hi again

      i should also add that i only made it through 3 doses and one week after the 3rd dose of the ipi/nivo combo my pituitary inflamed and I've been on steroids since to bring it down.  Finally got down to 10mg of prednisone without a headache so we started maintenance yesterday after being down to 10mg for a week.  Had my scans done 12 weeks after my last dose and I'm officially NED.  Personally I think the 4 doses is ideal and the max but for many of us, our bodies react so much that 2 or 3 may be enough.  I think strong side affects mean that your body may have had its fill of the drug so don't be upset if you can't get 4

      • October 29, 2016 at 3:45 pm
      KAF
      Participant

      Hi again

      i should also add that i only made it through 3 doses and one week after the 3rd dose of the ipi/nivo combo my pituitary inflamed and I've been on steroids since to bring it down.  Finally got down to 10mg of prednisone without a headache so we started maintenance yesterday after being down to 10mg for a week.  Had my scans done 12 weeks after my last dose and I'm officially NED.  Personally I think the 4 doses is ideal and the max but for many of us, our bodies react so much that 2 or 3 may be enough.  I think strong side affects mean that your body may have had its fill of the drug so don't be upset if you can't get 4

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