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1.5 years since last ipi/nivo combo treatment new side effects?
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1.5 years since last ipi/nivo combo treatment new side effects?

› Forums › General Melanoma Community › 1.5 years since last ipi/nivo combo treatment new side effects?

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    • December 15, 2020 at 5:08 pm
    Canadian melanoma wife
    Participant
      Hi all! Just looking for any thoughts on a current situation. My husband received whole brain radiation and the ipi/nivo combo treatment x8 with the last infusion being August 2018. Since September of this year he has been experiencing some really terrible abdominal pain. Bad enough that he went to the hospital for the first time in ages yesterday. His last scans say they can not see any active malignancy but that there is some “mural thickening of the ascending colon and a stable enlarged 12mm lymph node adjacent to the cecum”. I know that Ipi is notorious for having caused intestinal issues but my understanding was that this usually occurs during treatment not 18 months out. Has anyone else had these delayed responses or is this maybe just a separate issue all together. He did have an intussusception in August 2018, that’s why we stopped treatment. A tumor was dragging his intestines inside themselves and they were worried they would tear. Maybe this is scar tissue from that event? I can’t help but wonder why they would not have noticed nor why it wouldn’t have caused him pain before now if this was the case. Any thoughts are appreciated.
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        • December 15, 2020 at 11:48 pm
        Daisy2018
        Participant
          When you mention last scan do you mean yesterday scan?
          What did they do when he went in? What was their diagnosis?
          It’s more of a question to the surgeon. I would think he would have diarrhea as a side effect of ipi/ nivo. His pain sounds more like acute problem. I would think it has nothing to do with previous treatment. Did they say he can have intussusception again?
          Abdomen has so many different organs inside of it. At least make sure he is not constipated a come back if he is in pain and request a new scan if they didn’t do it yesterday.
            • December 17, 2020 at 9:34 pm
            Canadian melanoma wife
            Participant
              Sorry, to clarify Chris has scans every 3 months and alternates between a PET scan and a CT with additional MRI. His last routine scan was just 3 weeks ago. He did not receive a scan while in the ER as he just had one done. When the pain comes on it is very sudden he gets nauseated and throws up, and gets sweaty and it is not on one side or the other it’s an all over his abdomen pain. It lasts for a few hours then passes. So far there is no correlation between what he has or has not eaten or his bowel movements. No diarrhea or constipation. When the episodes happen he has tried a few antacids and gas medication and neither do anything to help. The intussusception was caused by a large tumor last time and there was no tumor 3 weeks ago so I am doubtful one had appeared and grown so large to cause a second occurence in such a short time. It could be damage left behind from it but why the pain now and not in the many month since. The hospital that he went to is in the epicenter for Covid cases in our province and the Dr he saw came directly from an ICU and because Chris had been there all day and the pain had subsided they just shrugged, told him to go home and went back to trying to deal with the people in more immediate danger. When Chris was really ill I was always keeping myself informed but he has managed to keep out of hospital for so many months that we have just been trying to push the melanoma boogeyman back under the bed. I just am not sure if anyone who had had the combination therapy or even Ipilumamab or Nivolumab individually have ever experienced a delay in intestinal issues. Google hasn’t given me any leads. Seems far fetched but I thought I might try to see if anyone had any information. We don’t see the oncologist again until the first week of January.
              • December 18, 2020 at 4:02 am
              ed williams
              Participant
                Sounds like it would be a good time to send a scope camera in for a look!!! Scans can only see so much. As far as Ipi/nivo or either drug on it’s own having side effects show up late, not common but does happen according to Dr. Weber and other melanoma experts. My own case would be an example of not following the general rules, of colitis developing early in treatments. I developed colitis 5 years and nine months into nivo treatments, long after I thought I would be clear of risk according to the averages. Immune related adverse events with check point inhibitors don’t follow the rule book and having an experienced oncologist is really important. There is a series on “research to practice” web site which features presentations by experts being interviewed by Dr. Love that gets into side effects with a few different melanoma experts. I will send you a link on another post or you can look it up yourself. It does require joining, free but requires filling out some information. Best Wishes!!! Ed
                • December 18, 2020 at 4:16 am
                ed williams
                Participant
                  Here is link to Dr. Michael Postow of NY and Dr. Mario Sznol of Yale talking about side effects with immunotherapy drugs in melanoma. https://researchtopractice.com/DOU119/Video/1?playlistIndex=0#t=0m0s
                • December 18, 2020 at 1:14 am
                Daisy2018
                Participant
                  Hi there,

                  Now it’s a pretty detailed report. It sounds pretty painful. I m sorry. I agree he should not have something significantly big grown during this short period of time after last scan. Is there any new medications like antidepressants? They may cause pain in nerves going through belly. Sounds like some sort of obstruction which gets resolved Eventually. The adhesion from previous problem maybe getting pushed by this thickening of the wall and making it obstruct regular movements of the bowel content.
                  I would suggest to go back if his symptoms come back  or wait until next scan and get some answers
                  Have him see an oncology surgeon for a consult..

                  • January 16, 2021 at 5:45 pm
                  Canadian melanoma wife
                  Participant
                    No new medications. In fact Chris takes no medication at all, essentially refuses any long term prescription now that the cancer has subsided. He is in rough shape and I almost wish he would consider a few meds but I guess I respect his courage to endure. The oncologist is sending him to see a general surgeon next week as well and a scope from both ends as he has some worsening swallowing issues from his neck dissection when he hit stage 3 back in 2015.

                    Thanks for the Link Ed. You are always so helpful. I will be sure to check it out.

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