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Pancreatitis and we are done for now?
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Pancreatitis and we are done for now?

› Forums › General Melanoma Community › Pancreatitis and we are done for now?

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    • May 13, 2018 at 5:21 am
    daughter1
    Participant

      Its not a good Mothers Day.  I am overwhelmed with sadness.   Mom rushed back to the hospital with pancreatitis flair up.   Seems as if that we conclude now that at this point she will flair up if she if prednisone because as she titrates off, she flairs up something fierce.  Dr. has already decided that she has to stop her Opdivo.  She was doing so well on it for almost a whole year and then this about 6 weeks ago we rushed her to the hospital for this pain.  Steroids help almost immediately.  But now what?  I am so scared and sad.   This is terrible.  I guess we will know more this week when she meets with a specialist.  Does anyone have any experience with this happening?  He won't put her on the Opdivo ever again will he?  What happens now?  

       

      Robin

       

       

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        • May 13, 2018 at 5:25 am
        daughter1
        Participant

          Please excuse the terrible writing.  I don't know how to go back and edit.  I haven't slept much.  I also didn't mention.  Mom- 2 rounds of combo ipi/nivo had to come off because of terrible liver and kidnery numbers, etc.   just opdivo every two weeks for almost a year very successfully.   Slowly but definite shrinkage in all tumors and more importantly no progression or new ones.   (liver and spleen)

            • May 13, 2018 at 3:28 pm
            cancersnewnormal
            Participant

              Robin… I hope you manage some sleep today. This is scary and it sucks. I too ended up with a pancreatitis issue, but on Keytruda. I was 20 months into treatments, and doing very well… NED with the exception of one already gamma radiated lesion in the brain "hanging around". I started having arthritis issues at about 18 months into treatment, and when the pancreatitis kicked in, docs decided that we needed to "take a break". That was July 2016. I'm still on "treatment break", because I've had no new lesions develop. It's possible that your mom's immune system is dealing so well with the melanoma, and is now overreacting to the long term use of the anti-PD1 meds in her system. Experts are still learning what the optimum amount of treatment time is. I'm not sure we will ever know, as it seems to be VERY individual. Your mom may have no further need for treatment. I would guess that docs will look into a PET scan to see if any of the remaining tumors in her are active, or if they're possibly just scar tissue. Stopping treatment was incredibly nerve wracking, particularly when things were going along so smoothly (until arthritis and pancreatitis!) and working so nicely! Fingers and toes crossed that any remaining areas are either scar tissue, or her body continues the attack without the need for further infusions. She may still be a complete responder… only time and some very unnerving future scans… will tell. Don't let it get you too far down. This may be the start of recovery for her. 🙂 

              • May 13, 2018 at 7:44 pm
              Sharon93065
              Participant

                Thank you for sharing,  It's good news about the shrinkage of all tumors. I had 3 treatments of ipi/nivo, then bad liver  numbers, had to wait 4 months of high does of prednisone before liver numbers were in normal range and i could get on opdivo maintenance.  Only 1mg because of the liver history.  2nd Petscan showed all 6 tumors mostly gone/shrank.  4th after prednisone showed two new 'nodes' in gut, one on left and one on right, Dr. said might not have even been cancer, next scan showed one gone the other shrank.  5th scan showed continued progress, i get to see the written report on the 21st but on the phone he said all looked good.

                So it sounds like on continued use of Opdivo or Keytruda we can get pancreatitis???  But thankfully we have lived long enough to get it!!! Maybe the lower dose of 1mg fo rme will help against that.

                Sharon 

                • May 13, 2018 at 8:03 pm
                daughter1
                Participant

                  Thank you so much for your replies.  I am hopeful from your replies but the tumors didn't shrink all that all that much. He did comment that they looked "dead" but they didn't shrink a lot.   I guess we will see.   Thanks again.   You are so kind for writing me back.  Very kind. 

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