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Success stories with only one dose opdivo/yervoy?

Forums General Melanoma Community Success stories with only one dose opdivo/yervoy?

  • Post
    Jaclinfarr
    Participant
      Hello

      My husband had his first dose of opdivo and yervoy last month for stage 4 in his brain and lungs. He had such a strong response that his doctor said it’s unusual to see this strong of a response on just the first dose. So his team has paused him for now but then the plan next month is to start him back on only one of those drugs. They said there’s too much concern that he will develop much worse side effects and so they will be very reluctant to return to the two together.

      Is there anyone out there who’s had a positive response with only ONE dose of the two drugs? We are worried they’re being too cautious. They want to do monthly CT scans and brain MRIs to closely monitor his mets.

      So far he’s had a good response to both gamma knife and Braftovi/Mektovi with his mets shrinking. But after the first infusion of immunotherapy he developed pretty severe uveitis and a rash.

      Would so appreciate hearing even just one positive story about a strong response to only one infusion of opdivo/yervoy.

      Thanks!

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    • Replies
        Edwin
        Participant
          After my first infusion of Opdivo and Yervoy in 2016 for melanoma in several bones, I was very ill with very bad diarrhea and lost too much weight. I was given Opdivo only while I recovered. I received my 2nd infusion of Opdivo and Yervoy 9 weeks after my first. For my 2nd, 3rd and 4th infusion of Opdivo and Yervoy my dose of Yervoy was cut to 50% of my 1st dose. I felt much better with the 2nd, 3rd and 4th Opdivo and Yervoy immunotherapy. I received immunotherapy for 4 years 6 months. My most recents PET scans have shown no cancer.
          JudiAU
          Participant
            I don’t have personal experience.

            But you should you know that there are lots of ways to administer immunotherapy. 1/2 doses or different pacings etc. There are different ways to administer to reduce side effects. Treating the side effect and returning to drugs. Returning to drugs at a different dose. Treating the side effect and returning to treatment with steroids throughout immunotherapy. Ideally, you would get a lot of the drugs which continue to work in your system.

            I developed high fevers after my second combo dose and was hospitalized for week. Then had craniotomy to control brain met and then returned to immunotherapy with steroid support. Also had one dose of radiation during this period. Finished all four combo sessions. Switched to single dose immunotherapy and completed two years. Been NED for three years.

            I’ve read an awful lot of treatment protocols. Hopefully your doctors can keep you on immunotherapy as long as possible. If your doctor isn’t a melanoma specialist please start seeing one.

              Jaclinfarr
              Participant
                Thank you Edwin. I’m so happy for you that your recent scan showed NED. It’s helpful to hear your journey. Hopefully they won’t need to return to the double dose but it’s nice to hear that may be an option again further down the line. Thanks for responding!
                Jaclinfarr
                Participant
                  Thanks JudiAU. That’s helpful. Yes he’s working with a medical oncologist at Fred Hutch/Seattle Cancer Care Alliance. She’s a melanoma specialist and has co-authored a paper on the efficacy of lower dosing on the Opdivo/Yervoy. So we do have a high level of trust with her. I just wanted to share with him some examples of one dose working. They haven’t ruled out returning to the double dose or even moving to a 50% dose. They are doing monthly body scans and brain MRIs to see how things are looking. She’s said with such a strong reaction early on, about 1/3 of people go on to develop worse SEs, 1/3 get new SEs and 1/3 do better with no SEs. So she feels it’s worth allowing his body to calm down then returning to one drug. It does sound like doctors are able to get creative with their approach to this. It’s all a huge learning curve for us so I really appreciate everyone sharing your stories.
                guynamedbilly
                Participant
                  I have read stories like that, but like you, I wouldn’t accept that answer without pressing some.

                  Definitely see a melanoma specialist if you aren’t. I’ve had great experiences with MDANDERSON.

                  Without knowing specifics of his reaction, there are possibilities to use novel treatments to reduce the side effects. I received Tocilizumab a few times along with my immunotherapy combo to allow me to get a few more doses before the insurance said don’t do that anymore. You could ask about something like that.

                  JudiAU
                  Participant
                    I am glad you feel you are in good hands. Because immunotherapy has so transformed melanoma care, a lot of patients and less experienced doctors I read about online are acting like it is sort of a done deal. But really we have much to learn about how immunotherapy can and cannot be administered to people with serious AE. I think many experienced doctors want more drugs + steroids, I know mine probably would. But I know other prominent doctors who still avoid mixing immunotherapy and steroids. What I want is for everyone to live.

                    A brain met that is present and not diminishing is a serious issue. So if it is not resolving/resolved because of the immunotherpy/radiation or planned crainiotomy please make sure you are getting a second opinion. They can spread quickly.

                    Jaclinfarr
                    Participant
                      Thanks very much JudiAU!

                      Well good news today in that his body CT showed a pretty dramatic shrinking of tumors in his lungs. Of course, we won’t know the outlook on his brain until the MRI results come in. Now he’s also got inflammation in his ears – over a month after his infusion. I guess that might be a good sign?

                      His drs haven’t ruled out putting him on steroids with the immuno at the same time but they do seem more cautious to do so compared to some of the stories i’ve heard from people online. And with monthly MRIs planned, they are keeping a close eye on brain mets. The last time they checked end of May, his brain mets had already shrunk after gamma knife and Braf/Mek inhibitors and of course he had a crainiotomy in early March to remove the largest tumor. The remaining 3 were very small. We should get latest brain MRI results any day now.
                      We are feeling hopeful and will keep folks updated in case anyone else wondering about this approach.

                      JudiAU
                      Participant
                        I am glad to hear about the positive CT scan!
                        Jaclinfarr
                        Participant
                          And yet more good news today! We finally reviewed his brain MRI results: NED!! No evidence of disease!!! I think even our doctor was a bit astonished by these results. Of course, he’s not out of danger yet. He’s still got a long road ahead of him but today is a good day and we are thrilled. The plan is to start him on Opdivo only next week then continue that every month for 2 years – provided he doesn’t need to go back on the Braf/Mek inhibitors or the Opdivo/Yervoy combination.

                          For those who might be new to this thread, here’s my husband’s history:

                          2020- treated for Stage II melanoma on chest. No spread to lymph nodes.

                          2024 – Approximately 4 months ago: admitted to ER with a “massive brain hemorrhage.” They subsequently discovered this was caused by melanoma tumors. They found 4 in his brain and 3 in his lungs. Craniotomy to remove the largest tumor that was causing the bleed.

                          Approximately 3 months ago: had 5 gamma knife treatments to treat the remaining 3 tumors. 2 weeks after completing the gamma knife sessions, he was started on Braf/Mek inhibitors for 1 month.

                          Approximately 6 weeks ago: first and only infusion of Opdivo/Yervoy. Experienced side effects about 6 hours after infusion – pain and burning in eyes. Led to diagnosis of uveitis. Also had a skin rash and dramatically lowered sodium levels. Was hospitalized for low blood sodium in ICU for 3 days. At that point his dr decided to pause the next infusion.

                          Today: uveitis cleared up. Some itching and inflammation in ears. Still some rash. “Resolution of multiple intracranial lesions.” Tumors in lungs have shrunk substantially. No new evidence of disease.

                          So it would seem the one dose of Opdivo/Yervoy is working. Of course, given what we’ve been through the last four months, we’re both happy but a little cautious to celebrate too much. Let’s hope this strong trajectory continues!

                          For those of you wondering about the efficacy of a single dose of Opdivo/Yervoy – this story is only one person’s journey and of course, we are all so different. Bodies respond very differently to these medications. But I hope my husband’s story is helpful to some.

                            ed williams
                            Participant
                              Jaclinfarr, if you go into discussion section of New England Journal of Medicine articles about original Ipi+nivo clinical trial called checkmate 067, you will see data on responses of patients who had to stop because of IRAE’s (side effects) and you will see that those patients did as well long term as those who got all 4 induction combination treatments. Bottom line, dose amount does not equal outcomes, some folk did great after just one treatment. https://www.nejm.org/doi/full/10.1056/NEJMoa1910836 https://www.nejm.org/doi/full/10.1056/NEJMoa1709684
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