Response to Ipi/Nivo after one dose?
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Response to Ipi/Nivo after one dose?

› Forums › General Melanoma Community › Response to Ipi/Nivo after one dose?

  • Post
    • December 27, 2018 at 5:31 pm
    AMcReader
    Participant

      Ok, I’m definitely getting ahead of myself but I went in to get my second dose of Ipi/Nivo yesterday and learned that my AST and ALT levels had increased dramatically. And along with that my LDH, which has always been under 155, went up to 233. As a result, we’re holding off on the next infusion until next week to see if my labs stabilize. If they don’t stabilize, then we’ll move to a steroid and figure out what’s next.

      Anyways, I know I’m getting way, way ahead of myself and I know that there are people that have a response when they don’t complete all 4 infusions but has anyone had a response after just one combo infusion?

      I’m a little worried that I may be one and done for the combo. In addition to the liver issues, I believe I’m also developing colitis. It still seems pretty low-grade right now in terms of symptoms but I’m having near-constant cramping. 

      All of this is a very small price to pay for a response, so I’m hoping that maybe other people have had a response after just a single combo dose.

       

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    • Replies
        • December 27, 2018 at 6:56 pm
        Gene_S
        Participant

          Have you called the onc. to let him know about the cramping?  With a weekend coming up I would give him a heads up just in case it gets worse.

            • December 27, 2018 at 7:04 pm
            AMcReader
            Participant

              Yes, I told her yesterday when we met to discuss my next treatment. 

            • December 27, 2018 at 6:57 pm
            Gene_S
            Participant

              Have you called the onc. to let him know about the cramping?  With a weekend coming up I would give him a heads up just in case it gets worse.

              • December 27, 2018 at 9:48 pm
              VinceMart
              Participant

                Hi Amanda, 

                I had my second dose of ip I Nick yesterday.  My ldh went to 1000 last week and now 1400 yesterday.  I have been on steroids since first treatment.  I had an MRI of my spine on Monday which showed significant progression of disease in my spine( which explains my excruciating back pain), but Dr still thinks ipi nivo  second dose was important so we did it.  I see radiation oncologist and palliative care tomorrow.  I would think a short break with some steroids and maybe you can get dose 2,  my doc thinks 2 doses are enough.  Good luck and keep trying.

                Vince

                  • December 28, 2018 at 4:51 pm
                  AMcReader
                  Participant

                    Hi Vince, I’m glad you were able to get a second dose. I’m hopeful that between radiation and the combo you are going to start to get some relief really soon! I’m rooting for you so hard! Keep working at it! I know you’re in a lot of pain right now but radiation and immunotherapy together can bring even better results. Good luck to you and keep me posted!

                  • December 27, 2018 at 10:55 pm
                  kst
                  Participant

                    Dr. Allison talks about a patient in a phase 1 Yervoy trial from 2001 that received only one dose.  Starts at the 6:35 mark in the video.

                    Susanne
                     

                      • December 28, 2018 at 4:48 pm
                      AMcReader
                      Participant

                        Hi Susanne, Thank you so much for sharing this! Although this may not be my case, I’m happy to hear it’s possible! 

                      • December 28, 2018 at 1:58 am
                      Mark_DC
                      Participant

                        Dear Amanda,

                        good luck but i think you may be rushing a little. How bad are your liver numbers? And your LDH is higher but not terribly high (maybe it was an odd day or maybe the meds were doing something i dont know). My intuition is maybe you are reacting to the ipi, that you need to get the liver numbers down – either by waiting at first (and if this works you can go back on treatment quickty) or if this does not work then steroids which in my case meant a longer pause. Then i think you could go back to nivo or keytruda alone.

                        i think saying you fear you may be one and done for the combo is too negative. That may be the case but then you should be able to go back to nivo or keytruda alone. Or these in combo with something else like an intralesional or a mek inhibitor or something else new – through a trial.

                        lets hope you have an immediate response, i wish for this and some people are lucky and this happens

                        but it maybe that you are in for a battle, this is one setback, but soon you will be back on treatment and that this treatment will work.

                        good luck and i hope for better liver results, then to find the right plan. I hope its an immediate response but be prepared for maybe a longer fight which you can still win!

                         

                          • December 28, 2018 at 4:52 pm
                          AMcReader
                          Participant

                            I know you’re right, Mark! I am prepared for war here and will keep marching on through. Thanks for taking the time to cheer me on! 

                          • December 28, 2018 at 6:00 pm
                          ed williams
                          Participant

                            Hi Amanda, the best long term data of the combination comes from checkmate 067, they published the 4 year data in October and the numbers looked near the same to the 3 year data in the following article. Hope you get back on treatment soon or at least the pd-1 going forward. Best wishes!!!Ed https://www.nejm.org/doi/full/10.1056/NEJMoa1709684

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