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Possible recurrence on NIVO. Any other options?
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Possible recurrence on NIVO. Any other options?

› Forums › General Melanoma Community › Possible recurrence on NIVO. Any other options?

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    • August 21, 2017 at 9:08 am
    rg1981
    Participant

      Hi there. I was first diagnosed in December 2015 with stage IV. Melanoma is in Ota's nevus and behind the eye, so nothing was visible – I have noticed thad I had some problems only after my eye started moving up in the eye pit and and double vision started. So finaly I was diagnosed with stage IV, inoperable, BRAF negative. I was prescribed to get nivolumab as single agent and until recently it worked fine. The tumor shrank significantly and SUV max was quite low (2-4). Up to date I have already got 41 cycles of Nivo without any significant side effect (except thyroid problems). But last Friday I received my latest PET-CT results and they were scary. The tumor started growing with SUV-max of 16 that as far as I undrestand is very high. So what it may be? Nivo stopped working? Are there any other treatment options? Has anybody ever had similar experience? Tumor board should be held on Wednesday and on Friday I'm meeting my doctor but would like to hear something before.

      Many thanks in advance

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        • August 21, 2017 at 1:02 pm
        ed williams
        Participant

          Hi rg1981, just throwing this out there but was there any discussion in the past of SRS like cyberknife or gammaknife surgery? I know that there would be concerns about vision loss in that eye, but it might be worth talking about at this point. Also there has been some cases where there is a synergistic relationship to radiation and immunotherapy drugs!!! Best Wishes!!!Ed

           

            • August 21, 2017 at 1:50 pm
            rg1981
            Participant

              Hi, Ed. Many thanks.! I have heard and read about cyber and gamma-knife but my doctors have never suggested it (at least up to date). Thanks for the idea – perhaps worth discussing. As for the radiation (I forgot to mention in my first post) I have alraedy had three session of radiation in teh begininmg of my treatment between first and second cycles of opdivo. Perhaps they could repeat it now. 

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