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Progression during Nivo and Ipi/Nivo
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Progression during Nivo and Ipi/Nivo

› Forums › Cutaneous Melanoma Community › Progression during Nivo and Ipi/Nivo

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    • May 22, 2020 at 10:14 pm
    chipgoodhue
    Participant
      My wife was diagnosed with Stage IIIB in December, had WAR on scalp and one small satellite tumor on neck removed, sentinels clean. Melanoma is Braf mutant, with high mitotic rate (10). Started Nivo in January. Small surficial skin lesions cropped up near surgery site in Feb, quickly followed by multiple subcutaneous tumors near the original satellite site. Ipi 3mg was added to the Nivo at the 4th infusion. She has now had 3 nivo only and 3 combined Ipi/Nivo infusions, unfortunately the neck tumors continue to progress and have coalesced into a area perhaps 1-1/2 inches across. Worse still, MRI and CT scan last Monday, brain clean but small tumors now present in liver (5) and lungs (2).

      We are struggling to believe that a delayed immunotherapy response is possible given the rapid progression. We are reluctant to wait several months for another ipi/nivo infusion and more scans, thinking we need to push for switching over to BRAF/MEK targeted therapy now.

      Would appreciate any insight others may have on this?

      Thanks in advance!

      Chip

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        • May 25, 2020 at 12:57 pm
        Bubbles
        Participant
          I am so sorry for the difficulties you and your wife are dealing with, Chip. I am a bit confused as to why you would need to wait “several months for another ipi/nivo infusion” as they are usually administered 4 times in succession, every 3 weeks. Nevertheless, responders to the combo usually see results in an average of 3 months though there are those who respond much later. Here is a report and graph addressing time to response that may interest you: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/time-to-responseipi-vs-nivo-and-ipi.html

          Still, since your wife is experiencing progression, that is even more worrisome than lack of resolution of existing tumors. My best advice would be:
          1. Make sure she is seeing a melanoma specialist. Just a consultation with a melanoma expert may be worth your while if your are not under the care of one already.
          2. Yes, given that she is BRAF positive, targeted therapy may be an excellent choice at this point.
          3. In the presence of sub-q lesions, she may also be a good candidate to continue immunotherapy, but add intralesional therapy. Here is a primer I put together that covers all current treatments for melanoma including intralesional therapy: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
          Here are a zillion articles on intralesional therapy itself: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=intralesional&max-results=20&by-date=true

          Hope that helps. I wish you both my best. Celeste

            • May 25, 2020 at 3:56 pm
            chipgoodhue
            Participant
              Thank you Celeste, I have been reading your blog, quite amazing…..perhaps the best resource on the planet for melanoma sufferers……thank you!!!

              She is passing the 12 week mark with no sign of progression slowing, and I don’t like counting on the outlier chance after looking at the response times on that graph!

              She will have her 4th round of Ipi/nivo week after next, then we generally wait several months for scans (she had CT/MRI 2 weeks ago when diagnosed with lung/liver mets) …..at the rate she is progressing, waiting that long seems very risky. We have discussed Tvec and BRAF/MEK inhibotors with her oncologist at SCCA in Seattle, he’d prefer to hold off on BRAF/MEK as a safety net, and is looking at an intralesional trial of a TLR agonist which he prefers to Tvec. Not recommending additional surgery, and her neck tumors may no longer be operable now. We have had a consultation with Dr. Funchain at the Cleveland Clinic who recommended adding Tvec. Dr. Topalain at JH also looked at her history via a researcher friend at Fred Hutch, and barring a detailed review thought moving to BRAF/MEK was advisable. We are leaning towards the BRAF/MEK and hoping that buys some time while something new comes out of trials……….seems to be the safest route. It may be possible to combine Tvec also, if the toxicity is not too bad. Will discuss with her oncologist tomorrow, and will post an update.

              Keep the good words coming.

              Best,

              Chip

              • May 25, 2020 at 7:06 pm
              MelMel
              Participant
                I have had a CT scan two months following the initial combo infusion showing a response. I continue on nivo. My melanoma oncologist at University of Michigan in Ann Arbor feels should I have progression, targeted therapy is next. I would definitely look at that since you need a quick, reliable response which may turn out to be longlasting as well.
                Hoping your wife finds the best treatment for her.
                Melanie
                • May 26, 2020 at 12:32 am
                Mark_DC
                Participant
                  Dear Chip,

                  You and your wife seem to be consulting with some really good people – the names you mention are all melanoma specialists. So I trust that her Seattle doctor is too.

                  My guess is that your wife’s next scans will be in 3 months (ie 10 weeks since you had them two weeks ago) time. So your doctor will consider whether she can keep on immunotherapy as is, or add tvec, (or some other intralesional) or go to braf-mek now – or wait until the next scans. I did not have BRAF but my progression was slower than your wife’s so they just kept me on pembro for a year and then It was going to be surgery but instead we tried TVEC plus pembro which seems to have worked. My guess is this is the kind of discussion you will have tomorrow and then you decide.

                  I know that BRAF/MEK can work miracles / buy time but dont know how long you can keep it in reserve.

                  I hope her appointment and discussion Tuesday go well – it seems quite trying but you do seem to be considering a lot of good options.
                  Good luck tomorrow Mark

                  • May 26, 2020 at 1:53 am
                  Bubbles
                  Participant
                    Thanks for your kind words. You might find the posts on this forum by TexMelanomex: https://melanoma.org/legacy/community/profiles/texmelanomex
                    interesting as he is a person on this board who utilized pembrolizumab (Keytuda) the other white meat (aka anti-PD-1 product) with the intralesional PV-10 with good results. Good luck tomorrow. c
                    • June 14, 2020 at 8:40 pm
                    chipgoodhue
                    Participant
                      She came down with pituitary swelling which caused excruciating headaches and nausea, prednisone taper seemed to help, then headaches returned accompanied by very scary motor and cognitive deficits, more prednisone and now improved. Lumbar puncture showed elevated protein and we are now waiting on hopeful negatives for both cytology and DNA testing, as positives would confirm leptomeningeal melanoma, not a good thing. Waiting for the test results is painful. Good news is she also started on Enco/Bini and her neck and head lesions are shrinking. Prayers all….

                      Chip

                      • June 14, 2020 at 8:41 pm
                      chipgoodhue
                      Participant
                        She came down with pituitary swelling which caused excruciating headaches and nausea, prednisone taper seemed to help, then headaches returned accompanied by very scary motor and cognitive deficits, more prednisone and now improved. Lumbar puncture showed elevated protein and we are now waiting on hopeful negatives for both cytology and DNA testing, as positives would confirm leptomeningeal melanoma, not a good thing. Waiting for the test results is painful. Good news is she also started on Enco/Bini and her neck and head lesions are shrinking. Prayers all….

                        Chip

                        • June 16, 2020 at 12:29 am
                        Bubbles
                        Participant
                          Fingers crossed for negative CSF results!!!! Glad the targeted therapy already appears to be having a positive effect. Hang in there. celeste
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