opdivo side effects?
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opdivo side effects?

› Forums › General Melanoma Community › opdivo side effects?

  • Post
    • December 16, 2015 at 12:35 am
    blessd4x
    Participant

    My husband is on his 3 treatment of Opdivo and having many unpleasant side effects.  Curious as to what others are experiencing as well.

     

    thank you!

Viewing 14 reply threads
  • Replies
      • December 16, 2015 at 3:39 am
      Bubbles
      Participant

      Tried to put this in one post but was blocked. Will try in parts.

      Link to anti-PD1 side effects generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

      • December 16, 2015 at 3:39 am
      Bubbles
      Participant

      Tried to put this in one post but was blocked. Will try in parts.

      Link to anti-PD1 side effects generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

      • December 16, 2015 at 3:39 am
      Bubbles
      Participant

      Tried to put this in one post but was blocked. Will try in parts.

      Link to anti-PD1 side effects generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

      • December 16, 2015 at 3:41 am
      Bubbles
      Participant

      Long boring post of my side effects and when they appeared during my 2 1/2 tyear nivo/opdivo trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html

      • December 16, 2015 at 3:41 am
      Bubbles
      Participant

      Long boring post of my side effects and when they appeared during my 2 1/2 tyear nivo/opdivo trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html

      • December 16, 2015 at 3:41 am
      Bubbles
      Participant

      Long boring post of my side effects and when they appeared during my 2 1/2 tyear nivo/opdivo trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html

      • December 16, 2015 at 3:44 am
      Bubbles
      Participant

      And finally…link to a recent post and excellent webinar by 2 melanoma experts regarding side effects and how to treat them:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

      I wish you and your husband my best. Celeste

      • December 16, 2015 at 3:44 am
      Bubbles
      Participant

      And finally…link to a recent post and excellent webinar by 2 melanoma experts regarding side effects and how to treat them:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

      I wish you and your husband my best. Celeste

      • December 16, 2015 at 3:44 am
      Bubbles
      Participant

      And finally…link to a recent post and excellent webinar by 2 melanoma experts regarding side effects and how to treat them:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

      I wish you and your husband my best. Celeste

      • December 16, 2015 at 8:50 am
      emagdnim83
      Participant

      Watch out for heart issues. There is at least one documented case of deadly heart failure with pembrolizumab which is very similar to nivolumab (opdivo): 

      http://www.ncbi.nlm.nih.gov/pubmed/25901283

      My father had a dangerously low heart beat rate (38) after his first dose of nivolumab. He suffers from atrial fibrillation for at least 20 years now so maybe people who already have heart issues should be careful while on immunotherapy. He also developed pneumonitis and fatigue for some weeks after his infusion. He didn't get a second dose.

      Best of luck to you and your husband.

      • December 16, 2015 at 8:50 am
      emagdnim83
      Participant

      Watch out for heart issues. There is at least one documented case of deadly heart failure with pembrolizumab which is very similar to nivolumab (opdivo): 

      http://www.ncbi.nlm.nih.gov/pubmed/25901283

      My father had a dangerously low heart beat rate (38) after his first dose of nivolumab. He suffers from atrial fibrillation for at least 20 years now so maybe people who already have heart issues should be careful while on immunotherapy. He also developed pneumonitis and fatigue for some weeks after his infusion. He didn't get a second dose.

      Best of luck to you and your husband.

      • December 16, 2015 at 8:50 am
      emagdnim83
      Participant

      Watch out for heart issues. There is at least one documented case of deadly heart failure with pembrolizumab which is very similar to nivolumab (opdivo): 

      http://www.ncbi.nlm.nih.gov/pubmed/25901283

      My father had a dangerously low heart beat rate (38) after his first dose of nivolumab. He suffers from atrial fibrillation for at least 20 years now so maybe people who already have heart issues should be careful while on immunotherapy. He also developed pneumonitis and fatigue for some weeks after his infusion. He didn't get a second dose.

      Best of luck to you and your husband.

      • December 17, 2015 at 2:35 pm
      blessd4x
      Participant

      Thank you all for the feedback!  My husband is having severe pains in his pelvic area, "hot flashes" if you will, constipation, fatigue and now having some pretty serious memory issues.  I know theres a laundry list of side effects and not everyone gets them all.  Of course, Im concerned about them along with every cough and sneeze.  Its a roller coaster as you all know. 

      • December 17, 2015 at 2:35 pm
      blessd4x
      Participant

      Thank you all for the feedback!  My husband is having severe pains in his pelvic area, "hot flashes" if you will, constipation, fatigue and now having some pretty serious memory issues.  I know theres a laundry list of side effects and not everyone gets them all.  Of course, Im concerned about them along with every cough and sneeze.  Its a roller coaster as you all know. 

      • December 17, 2015 at 2:35 pm
      blessd4x
      Participant

      Thank you all for the feedback!  My husband is having severe pains in his pelvic area, "hot flashes" if you will, constipation, fatigue and now having some pretty serious memory issues.  I know theres a laundry list of side effects and not everyone gets them all.  Of course, Im concerned about them along with every cough and sneeze.  Its a roller coaster as you all know. 

        • December 17, 2015 at 3:43 pm
        emagdnim83
        Participant

        Uh oh, "serious memory issues" could also be a symptom of brain mets or a stroke (maybe caused by bleeding brain mets)!  Please let this be monitored asap.

        • December 17, 2015 at 3:43 pm
        emagdnim83
        Participant

        Uh oh, "serious memory issues" could also be a symptom of brain mets or a stroke (maybe caused by bleeding brain mets)!  Please let this be monitored asap.

        • December 17, 2015 at 3:43 pm
        emagdnim83
        Participant

        Uh oh, "serious memory issues" could also be a symptom of brain mets or a stroke (maybe caused by bleeding brain mets)!  Please let this be monitored asap.

        • December 17, 2015 at 4:33 pm
        blessd4x
        Participant

        thank you for that!  He even got into MY car the other day to go somewhere.. He's never driven my car..his last MRI in september showed a very small spot in the brain that could not be determined what it is because it is so small.  At that point they were not concerned.  He's supposed to get another PET scan in January. The memory issues started a couple weeks ago and are getting worse.

        • December 17, 2015 at 4:33 pm
        blessd4x
        Participant

        thank you for that!  He even got into MY car the other day to go somewhere.. He's never driven my car..his last MRI in september showed a very small spot in the brain that could not be determined what it is because it is so small.  At that point they were not concerned.  He's supposed to get another PET scan in January. The memory issues started a couple weeks ago and are getting worse.

        • December 17, 2015 at 4:33 pm
        blessd4x
        Participant

        thank you for that!  He even got into MY car the other day to go somewhere.. He's never driven my car..his last MRI in september showed a very small spot in the brain that could not be determined what it is because it is so small.  At that point they were not concerned.  He's supposed to get another PET scan in January. The memory issues started a couple weeks ago and are getting worse.

        • December 17, 2015 at 7:22 pm
        ed williams
        Participant

        There is nothing that I have come across in my research that would suggest that the symptoms you are talking about as far as memory would be associated with Opdivo. They do list under 5 to 20% chance of happening "confusion" caused by low blood phosphate level. However my own experience tells me that brain mets pop up fast and the sooner treated the better the outcome. I would push for an appointment with your oncologist to discuss the side effects he is having. With melanoma and Pd-1 drugs communication with your oncologist is very important. Wishing you the best!!!! Ed

        • December 17, 2015 at 7:22 pm
        ed williams
        Participant

        There is nothing that I have come across in my research that would suggest that the symptoms you are talking about as far as memory would be associated with Opdivo. They do list under 5 to 20% chance of happening "confusion" caused by low blood phosphate level. However my own experience tells me that brain mets pop up fast and the sooner treated the better the outcome. I would push for an appointment with your oncologist to discuss the side effects he is having. With melanoma and Pd-1 drugs communication with your oncologist is very important. Wishing you the best!!!! Ed

        • December 17, 2015 at 7:22 pm
        ed williams
        Participant

        There is nothing that I have come across in my research that would suggest that the symptoms you are talking about as far as memory would be associated with Opdivo. They do list under 5 to 20% chance of happening "confusion" caused by low blood phosphate level. However my own experience tells me that brain mets pop up fast and the sooner treated the better the outcome. I would push for an appointment with your oncologist to discuss the side effects he is having. With melanoma and Pd-1 drugs communication with your oncologist is very important. Wishing you the best!!!! Ed

        • December 18, 2015 at 11:21 am
        emagdnim83
        Participant

        Please call your oncologist NOW.

        • December 18, 2015 at 11:21 am
        emagdnim83
        Participant

        Please call your oncologist NOW.

        • December 18, 2015 at 11:21 am
        emagdnim83
        Participant

        Please call your oncologist NOW.

        • December 18, 2015 at 1:05 pm
        blessd4x
        Participant

        I called her and she wants to do an MRI asap.  My husband is refusing…..

        • December 18, 2015 at 1:05 pm
        blessd4x
        Participant

        I called her and she wants to do an MRI asap.  My husband is refusing…..

        • December 18, 2015 at 1:05 pm
        blessd4x
        Participant

        I called her and she wants to do an MRI asap.  My husband is refusing…..

        • December 18, 2015 at 2:16 pm
        emagdnim83
        Participant

        Maybe ask her how about giving him Dexamthasone? This is a serious situation – if brain mets are bleeding damage could be permanent if he isn't treated as soon as possible. Please try to convince him.

        • December 18, 2015 at 2:16 pm
        emagdnim83
        Participant

        Maybe ask her how about giving him Dexamthasone? This is a serious situation – if brain mets are bleeding damage could be permanent if he isn't treated as soon as possible. Please try to convince him.

        • December 18, 2015 at 2:16 pm
        emagdnim83
        Participant

        Maybe ask her how about giving him Dexamthasone? This is a serious situation – if brain mets are bleeding damage could be permanent if he isn't treated as soon as possible. Please try to convince him.

        • December 18, 2015 at 2:48 pm
        blessd4x
        Participant

        Im definitely trying to convince him. Im so lost and angry.  He doesnt see what I see happening.

        • December 18, 2015 at 2:48 pm
        blessd4x
        Participant

        Im definitely trying to convince him. Im so lost and angry.  He doesnt see what I see happening.

        • December 18, 2015 at 2:48 pm
        blessd4x
        Participant

        Im definitely trying to convince him. Im so lost and angry.  He doesnt see what I see happening.

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