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Ipi/Nivo questions
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Ipi/Nivo questions

› Forums › General Melanoma Community › Ipi/Nivo questions

  • Post
    • October 13, 2023 at 7:13 pm
    MB
    Participant
      Hello, I wrote a few weeks back about my spouse who has stage IV melanoma with brain Mets and a heavy tumor burden (in every organ). She received her first infusion of ipi/Nivo 3 weeks ago, which has depleted of all of her energy and she has lost a lot of independence (went from walking and being active to now needing a wheelchair). She says she feels like she’d rather die than endure this treatment but is willing to continue. Her oncologist added a steroid and gave IV fluids which helped a bit. I was just looking at her body, and all of her tumors have significantly grown and seem more swollen. I heard this can happen with immunotherapy at first. My question is: when should we see these tumors start decreasing in size? I fear her cancer has spread too much for immunotherapy to work. She is completely miserable. Any insight or personal experiences would be greatly appreciated. I know Bubbles offers a wealth of knowledge. I appreciate this forum so much. I wish I had found it sooner. Thanks, MB
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        • October 14, 2023 at 6:23 am
        MB
        Participant
          *correction: she had her first infusion 2 weeks ago (feels like forever ago) and is due for the second cycle next week. Also, there are new tumors that have popped up (swollen nodules) since starting ipi/nivo. I was thinking maybe they were already there but can now be felt/seen due to the swelling. Thanks!
          • October 14, 2023 at 11:41 am
          Bubbles
          Participant
            Hi MB,

            Sorry you and your wife are dealing with all this. Unfortunately, the fatigue caused by immunotherapy is often significant. While immunotherapy is slower than some processes to work (Docs are warned by immunotherapy experts to – “Be patient with the patient!”)it can also cause something referred to as pseudoprogression – where the tumors appear to grow due to the influx of t-cells that are hopefully arriving on the scene fully armed and ready to do away with the melanoma.

            Here is a post that describes immunotherapy and has a chart included re response times –
            Primer for Current Melanoma Treatments – New and Improved Version 2022!!!!

            Here are a zillion articles on pseudoprogression – some may be more applicable to your concerns than others – my interpretation is in red. Articles are cited.
            Pseudoprgression

            Hope this helps a bit. Wishing you and your wife my best. Celeste

            • October 14, 2023 at 7:33 pm
            eddy
            Participant
              iam scheduled to start immunotherapy next wed,however iam very concerned, worried about colitis or any side effects of bleeding, because I was only 6yrs young when I had a diverticulitis that older people usually get, then in 98 had bleeding ulcer coderized and in 03 another bleeding ulcer coderized, so I feel the odds are bad and just unsure, my pet scan is this Wed so if the cancer has not spread any farther than my neck I will ask my surgeon to talk about surgery first then immunotherapy second, the surgeon wanted to try to shrink the tumor first and I understand that except with my bleeding history, so any advice, knowledge, information, prayers, I will appreciate that thanks ed.
                • October 14, 2023 at 8:07 pm
                ed williams
                Participant
                  Ed, following link features a leading expert in melanoma from Australia and she talks about the concept of neo-adjuvant treatment before surgery and the logic and immune response that can happen when tumor is present vs giving drug after surgery with no tumor present. Doctors can learn a lot by how the tumor tissue look under the microscope after surgery. When there is tumor the immunotherapy drugs have a target to do their thing. good luck with decision. https://www.youtube.com/watch?v=LPhuuC4QnTw
                  • October 15, 2023 at 11:29 am
                  eddy
                  Participant
                    tks ed Williams, so much to try and understand, what a scientist knows is something your average person does not think about or no reason to think about but they are kinda the silent angels,some things work and some do not, bottom line they make the difference for life, great lecture, tks again and will keep posted here,ed Snider
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