Home Forums Melanoma Diagnosis: Stage IV Yervoy, danger of perforated gut and "intussusception"

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  • #22309
    Lesli
    Participant

    Hi All,

    I concluded my 4th infusion of Yervoy on September 25. Starting in November, severe fatigue, diarrhea, aching joints and muscles (like arthritis) made everything an effort. My scans this week showed nothing new, all existing lesions either stable or shrinking. Terrific!

    My only complication is a case of “intussusception,” which is when the small intestine telescopes and folds on itself. My question for all of you has to do with cases of perforated gut, colitis and inflamed bowel as possible (severe) side effects of Yervoy.

    1) Could intussesception be caused by inflammation, and thus, possibly rectify itself? My inflammation seems to ebb and flow.

    2) What is the actual action that causes perferation of the intestine when it is inflamed? That is, when folks say that the greatest challenge with Yervoy is the risk of a perforation, what is the physical cause?

    Thanks in advance for your help. I will be seeing a gastro specialist this week, but he/she has no experience with Yervoy.

    Lesli

    #66068
    jeff77
    Participant

    Lesli, so glad for the good news! I had an intussuseption that was so painful / dangerous that it require immediate surgery. Does not sound like version you have. However, my understanding is melanoma lesions in the intestines are pretty difficult to spot. My intussusception was caused by a lesion that was apparently growing slowly and did not get picked up by CT scan but eventually caused the telescoping in on each other. I was on PD-1 trial at time and there was reason to believe from the pathology from surgery that PD-1 was at least partially working on the lesion but still resulted in the intussusception. Not sure if this is useful info or not

    #66069
    Lesli
    Participant

    Thanks so much for your response, Jeff. I will pursue the underlying cause in the coming weeks for sure.

    I still wonder about Yervoy, colitis and the role of inflammation. If I get an answer in the coming weeks, I’ll share.

    Lesli

    #66070
    JBunyan
    Participant

    This is a UK Cancer Support website that gives a rundown on Yervoy. I was lucky to have had no symptoms during the 4 doses but I have some arthritis and vitilago now – luckily so far I am in remission.

    http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Biologicaltherapies/Monoclonalantibodies/Ipilimumab.aspx

    #66071
    jualonso
    Participant

    Hi Jbunyan, congratulations for being NED after ipi. I finished 4 dose of yervoy too few days ago. No side effects so far, just a little fatigue i think. But my problem is that some lymph nodes are swelling during this period. My onc said that sometimes, there are swelling before ipi works.

    did you feel something similar?

    thanks

    Juan

    #66072
    JBunyan
    Participant

    jualonso

    My oncologist did warn that some mets may have a (hopefully temporary) increase in size before (again hopefully) shrinking or even disappearing. My torso mets took about 3 months after final Ipi dose to be non detectable by CT. I realise that the Ipi response is around 20 – 30% but I just hope it lasts. My next CT is in March so hoping for the best. I think the 2 – 3 month CT scan post Ipi is the one to watch.

    #66073
    rick1981
    Participant

    Hi Lesli,

    How are you doing? Wishing you well !

    Rick

    #66074
    Lesli
    Participant

    Hi All,

    Jeff, thank you for sharing your experience. To bring some closure to this thread, and for those to come who might have a similar question, I too had a tumor in my small intestine that was not “visible” but for the intussusception that followed. While I had been hoping that the symptoms I was experiencing were related to Yervoy inflammation, in fact I had a tumor that my intestines worked hard to move on through. The gut collapsed on itself (like an old car antennae, was the analogy supplied by the surgeon) which led to emergency surgery for a blockage. A complete blockage is impossible to miss, since it caused me to be violently ill (on a plane to New Orleans, no less).

    I am recovering from laparoscopic surgery now and am grateful for PD-1 in the near future.

    #66075
    buffcody
    Participant

    Lesli,

    Was the tumor removed through the laproscopic surgery? I’m dealing with a tumor on my duodenum and am looking into surgery, the less involved the better, though I at this point am hearing more about full bore Whipple procedure.

    #66076
    cheris
    Participant

    Hi, Lesli,

    I hope you are feeling better. I also had a blockage that resolved itself right before I had a tumor in my intestine removed. It took them almost a year and many, many tests before the tumor showed up on one of the tests ( my second capsule endoscopy). I’m happy that you’ll be able to take advantage of PD1 if you need it. Good luck.

    Cheris

    #66077
    Lesli
    Participant

    Hi Buffcody,

    As I was going in to surgery, the hope was to remove the tumor laparoscopically, but a full blown incision was a possibility. I signed on the line for all of it. I was lucky they were able to remove the tumor (ping pong ball size) laparoscopically, which reduced the recovery time in the hospital from 7 days to 4.

    That said, damaged abdominal muscles are damaged abdominal muscles. Give me a craniotomy any day ;) We don’t use our heads as often as we do our stomach muscles.

    Leslie

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