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Hello colitis, good-bye Nivo

Forums General Melanoma Community Hello colitis, good-bye Nivo

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      My next side effect from Nivolumab turns out to be colitis. I had grade 1 or 2 diarrhea for about a week. Lab found leukocytes but nothing else in my stool so I was put on prednisone prior to what would have been my 9th treatment. That didn’t keep it in check so when I went to see my oncologist this time, he switched me to prednisone, a 25-day tapered course. So far, after two days, that seems to be working — no movement of any kind so far. I’ve also started gaining back some of the weight that I lost, which is good. 

      The not-so-good is that I’ve been taken off Nivolumab completely. Funny, I chose not to go with the Ipi/Nivo combo because I was wary of the side effects and here I get diabetes and colitis from Nivo monotherapy, with my thyroid hanging on by a thread. As my brother said, I should be scratching lottery tickets if I’m hitting those kinds of odds. 

      Losing the Nivo was an emotional blow. I feel like I’ve had a life preserver yanked away from me. I’m not Braf positive and my side effects probably disqualify me from most trials. I just have to hope that the Nivo did its job. 

      I was stable on my last scans and the doc isn’t sure if I have any active tumors remaining. I’m getting a pet scan and an MRI next month (if the insurance company approves) and hopefully I’ll get the all clear then. If not, I’m not sure what I’ll do. 


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          The side effects of immunotherapy are intense. I only got through 2 of my ipi/nivo combinations before the colitis/gastritis/liver enzymes went crazy. But getting control of the side effects is important before they totally ruin your life! Every year, more and more therapies are coming out of trials and there are TONS of options now compared to just a few years ago. Hang in there – get your strength back – and there will be more options IF you need them. One day at a time, my friend!



            I had similar AE's occur after 10 doses of Nivo monotherapy.  Still NED 1 year after discontinuing treatment.  Here is an abstract from ASCO 2018 that explains response rates, RFS, and possible retreatment if recurrence happens.  My doc stated he would not hesitate to restart Nivo if progression occurred and AE's were under control-but not until then.





            Charlie the Unicorn
              Hi, we are hitting the odds as I just joined MRF to connect with colitis issues. In 2017 after my second infusion of IPi (Yervoy) I developed colitis. We stopped the infusions. The first hospital stay we got things under control with steroids. My second and third hospital stay Remicade got it under control. My fourth stay Remicade failed and I declined in health. I needed blood transfusions, TPN, 20 days in the hospital with Entivio got the colitis under some control. I spent the next 6 months dealing with the nausea, stool, and level 6-7 pain with Fentanyl patches. That portion of the experience was like having the nasty 24 hour stomach flu, but it lasted six months. Just last month I have started Stelara and already have great improvement. My first hospital was a death path, Chapel Hill saved my life. There needs to be more education about Ipi and other like drugs inducing colitis that is steroid resistant. Getting the Remicade and Entivio approved by insurance is a race against time. Education not just for oncologists but GI doctors too. I am better gut wise and now taking Braftovi/Mektovi for mets in my arm and liver. I am working with the side effects, but I now have panic attacks that are more terror attacks leaving me screaming into pillows. I’m known to be of cool character. Wow, you learn something new every day, unfortunately it has been the hard way. I keep it positive and keep trying. I hope my post is helpful for you, it has been helpful for me.

                I stopped Ipi/Nivo last year due to side effects (Pituitary and Liver).  Had a partial response and treatment stopped.  Unfortunately I had progression earlier this year and restarted Nivo monotherapy 4 weeks ago.  In for round 2 on Monday and hoping for another response 

                best of luck to you


                  Charlie the Unicorn
                    Wishing you the best for a response. Reading my post I forgot to say I have psoriatic arthritis autoimmune disease.
                    It makes treatments and side effects difficult. Luckily, Stelara treats both the colitis and PsA. I am very happy to be getting better in that respect. It has allowed me to get off Prednisone. I am not diabetic or having thyroid issues. I share your feeling of no safety net. Hanging in there, research is underway.

                    i had one treatment of IPI/NIVO, then developed serious colitis that was never cured.  Had steroids, remicade, and entyvio.  None worked, ended up with a colectomy which saved my life.

                    My point is that I only had one treament and in less than a year I am NED.  If you are getting colitis, chances are your immune system is attacking your tumor(s).

                    Do not fret that you will not be continuing Immuno.


                    Good luck!


                        Thanks for that good news story, although I'm sorry for what you had to go through. Yes, I'm trying to see this as a good thing, At least my diarrhea is currently under control now and we'll see what happens as I taper off the steroids.


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