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keytruda induced colitis
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keytruda induced colitis

› Forums › General Melanoma Community › keytruda induced colitis

  • Post
    • September 17, 2018 at 2:19 pm
    dsfarms13108
    Participant

      has anyone been on keytruda for a while and then developed  colitis because of the keytruda ?  i have been on keytruda for 5 years and just 2 weeks aago  came down with keytruda induced colitis -now they are thinking of kicking me off treatment and watching and waiting and im freaking out because they are saying i probably cant go back to keytruda -and i need to know what else is out there that wouldnt do the same thing -im on steroids and antibiotics right now for the colitis but i know this melanoma runs like wildfire and it scary to think they are just going to watch and wait 

      please advise if anyones been in my shoes 

       

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        • September 17, 2018 at 4:21 pm
        Scooby123
        Participant

          Hi dsfarms13108,

          i am on keydruda at moment but only a year, just had a tumour removed from lower intestine. I have issues with my liver so no treatment till it goes back to normal. Not on steroids as my bloods showed liver count getting better that's without any meds to help. 

          You have been on keydruda a long time. Have you any evidence of melanoma . I know it's very scary not been on treatment and watch and wait. 

          Am sure you get some response regarding colitis on treatment and what steps they took. Not sure if it's correct but I heard if you come of keydruda for longer than 3 months then it's harder to get back on it. Might be different in different countries. 

          Again am not sure with not having colitis before if once under control you can resume treatment, but am sure you get some response on it.

          wishing you well

           

          Scooby X

            • September 17, 2018 at 5:17 pm
            dsfarms13108
            Participant

              thanks for getting back to me  i appreciate all the help and insight and i know weach case is different -and i trust my dr at dana farber 

              thanks for caring 

               

              • September 18, 2018 at 12:47 am
              kst
              Participant

                I had grade 3 Opdivo induced colitis (along with several other AE's) after 10 doses.  I questioned the doctor about restarting treatment and he stated withholding nivolumab for grade 3 AE's was standard procedure, but if progression occurred he would not hesitate to reintroduce.

                If you have been on pembro this long, apparently you are responding to treatment and have not progressed.  The following abstract from 2018 ASCO shows a small sample of patients who were forced to  stop treatment for AE's.  Not a single person in the sample died from disease progression-Several died from AE's only.

                Karen

                https://meetinglibrary.asco.org/record/163559/abstract

                 

              • September 17, 2018 at 4:39 pm
              MelanomaMike
              Participant
                Hi, i do not have Colitus but, have read up that Immunol therapies & maybe even Chemo therapies can cause this for folks so, if you happen to have it now your right on schedule! Your not special i hate to say! But, theres great treatment (wich theyve started you on) its just the potential “stopping” of your Pembro till it clears up or under control that sux eggs…youll be fine, pros & cons pros & cons….Mike
                • September 17, 2018 at 6:08 pm
                Bigaljukin
                Participant

                  i had one dose of IPI/NIVO and developed colitis 10 days later.  I was taken off treatment and 6 months later i am NED.  If you have colitis, it means your immune system is where it needs to be, and is probably attacking your tumor(s) as well.  Don't freak out about treatment, focus on getting your colitis under control.

                  • September 17, 2018 at 7:26 pm
                  bjeans
                  Participant

                    Not exactly the same, but maybe parallel? My husband developed colitis on nivo or nivo/ipi (don’t know which study arm). He was put on prednisone and two infusions were skipped (actually delayed), and slowly weaned off the pred over weeks. During the weaning off period he did go back to getting infusions in the study. Of course colitis can be terrible or relatively mild, so what worked for him might not at all for someone else. And since side effects can build up over time, no guarantee, just hope that he’ll continue to be fine. 

                    Side note: he also switched to a different probiotic that *may* be helpful for diarrhea, and added a small amount of green banana flour to oatmeal or liquid to aid digestion. Yeah, sounds wonky, but a cancer center dietician worked with us and mentioned a medical formula with a banana flour base that’s given to hospital patients. We didn’t want to use it because of lactose and some other ingredients, but another highly respected dietician had suggested we just use the flour – which only has a positive effect when uncooked/unbaked. 

                    Good luck to you and hang in there.

                    Beth

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