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Nivolumab and my liver aren’t friends
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Nivolumab and my liver aren’t friends

› Forums › General Melanoma Community › Nivolumab and my liver aren’t friends

  • Post
    • October 30, 2018 at 6:34 am
    AndrewB84
    Participant

      Hello!

      My name is Andrew. I have stage 4 melanoma. I have a tumor right next to my inguinal lymph node that was about 4cm x 4cm, I had another growth in my mesenteri c node in my mid abdomen, and a couple of other small spots. My doctor placed me on a treatment of both Nivolumab and Ipilimumab. I have received two rounds of both drugs. After the second round I noticed a dramatic decrease in the size of my tumor on my leg. When I went to get my third round of treatment my doctor noticed that my aspartate aminotransferase numbers were high. They put me on prednisone to get them back in line. My doctor wanted to taper me off the steroids, but my liver isn’t having that. The numbers went back up as soon as I tried to lower the dose. My doctor wants me to stop taking Nivolumab, since it’s what did this to my liver. I’m still going to be taking Ipilimumab.  I’m about a month late for my third round, has this sort of thing happened to anyone else? I’m wondering if this is a bump in the road, or something that just happens to other people taking both drugs. 

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    • Replies
        • October 30, 2018 at 12:57 pm
        ed williams
        Participant

          Hi Andrew, glad to hear you are having a response. I have a vidoe link for you on the combination and how many treatments. The video is from a couple of years ago and still holds true today as far as how many doses. One other thing it is usually Ipi that causes the toxicity!!! Best Wishes!!!Ed https://www.youtube.com/watch?v=VCOAk7i9kmU

          • October 30, 2018 at 3:07 pm
          RichInLife2
          Participant

            Hi Andrew,

            I'm curious why your doc thinks that it's the Nivolumab and not the Ipilimumab causing the liver numbers to be high. From what I've read, both drugs present an increased risk of liver toxicity.

            https://livertox.nlm.nih.gov/Nivolumab.htm

            https://livertox.nlm.nih.gov/Ipilimumab.htm

            I'm not a doctor, but I'd be more inclined to suspect the ipilimumab.

              • October 30, 2018 at 3:19 pm
              RichInLife2
              Participant

                Your doctor may have good reason to suspect the Nivolumab, but it's definitely something I would ask about.

                • October 30, 2018 at 6:47 pm
                AndrewB84
                Participant

                  Honestly it may be the Ipilimumab. It is seriously overwhelming having all the information thrown at you in those doctors visits. My fiancé comes with me to all my visits just so I have someone else to hear what I’m hearing. I know the doctor said something and I may be misremembering things. They are the ones who know better on that stuff. Regardless of which of the drugs in the cocktail is causing the liver stuff, I know I’ll go on with the other. I keep on being happy that I’m witnessing some results with the tumor shrinking. I’m just hoping that this break from treatmeant from steroids doesn’t interfere with further results.

                • October 30, 2018 at 6:45 pm
                MarkR
                Participant

                  Hi Andrew

                  you will be able to find further detail in my other posts but my liver numbers went up to 440 at the same time I suffered and enlarged pituitary gland.  I was taken off treatment and onto prednisone and MMF (Mycophenolate – immunosuppressant).  My numbers initially dropped but then went up again and then dropped away and returned to normal.  I was off treatment for 3 months and on my next ct scan observed shrinkage of 0.5-1cm.  For a number of reasons I remain off treatment and have next scans in early December where the hope is I will either continue in reduction or be stable.

                  the good news is you have reacted and focus on that rather than getting more treatment as I am told Ipi/Nivo stays in your system for 2 years so a delayed treatment isn’t too much to worry about

                  best wishes

                  mark

                    • October 30, 2018 at 10:04 pm
                    AndrewB84
                    Participant

                      Thank you Mark for the encouragement. The thing that has been frustrating about this whole thing has been the waiting. I want to get this done with. I wish I could just get a Mellon baller and just scoop the damn tumor off my leg. Also it would be totally cathartic to be able to smash the tumor with a hammer. I know it doesn’t work that way, but a guy can dream. I need to excercise patience and remember the good things. It’s just a struggle. Thank you for your perspective, it definitely helps. 

                    • October 31, 2018 at 1:18 am
                    Bubbles
                    Participant

                      All immunotherapy…ipi, nivo, and pembro…can cause lots of side effects including problems with liver function.  However, ipi is generally the bad boy of the three.  So, I hope that your doc is stopping the ipi and continuing nivo alone.  

                      Here is a link to a report on an algorithm for dealing with side effects including hepatic (liver) ones:  

                      http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/excellent-pdf-on-how-to-deal-with.html  

                      Here is some more good news.  Lots of folks (about 40%) are unable to tolerate all 4 doses of the ipi/nivo combo and have to go onto nivo alone before completing them.  The good news?  Those folks do pretty much as well as those who do!  Here's the data with a prior report linked within: 

                      https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/40-of-melanoma-patients-stop-ipinivo.html    

                      Hope this helps.  I wish you my best.  Celeste

                      • November 1, 2018 at 4:18 pm
                      MelanomaMike
                      Participant
                        Hi Andrew, im Mike, im also Melanoma’s Stage Four client, Melanoma’s BEST client that is, wow! Ok, you started off at four right away! (If i read your post correctly) stay strong brother!
                        Im not to saavy with all the knowledge of “How It Works” with meds & our shared disease but, how did yer Doc know for sure it was Opdivo that caused your Liver to act up? Like brother Ed mentioned, its “Usually” the Devilish Yervoy that is the cooperate to a good deal of early side effects but, Opdivo’s no slouch in the side effect area either! Just “How” he (yer doc) was able to determine it was Opdivo is amazing! I mean, im not smart at this, he may be able to who knows! Please inform us!! Stay strong man, stay the course!
                        • November 4, 2018 at 5:41 pm
                        Ridingaroundwith27Jennifers
                        Participant

                          Hi Andrew,

                          I was also on ipi/nivo combo an had liver issues.  They had me on very high doses of steroids and stopped all treatment.  Everytime they tapered the steroids my liver numbers would shoot back up.  They finally had to put me on cellcept (spelling?), and immunosuppressent given to transplant patients to calm my liver down.  I ended up back on nivo with no liver issues thus proving it was the ipi.  

                          Everybody is different but I've always heard that ipi is the liver killer and in my case that was true.

                          Maybe your doc could share his/her thoughts on the issue with you in more depth?

                          Good wishes to you,

                          Jennifer

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