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Nivo once a month
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Nivo once a month

› Forums › General Melanoma Community › Nivo once a month

  • Post
    • April 11, 2018 at 8:28 pm
    tedtell1
    Participant

      Greetings everyone;

      Things have been going well recently, clear scans and generally the Nivo has been treating me okay. I am currently receiving the treatment every 2 weeks. I have been given the opportunity to start the once a month regimen. I know other people have started this….does anyone have any information/input on that? I know initially there were some negative reports. My doc has several patients doing it and none of them have had any problems. They have seen a small amount of inflamation in my right lung that causes a persistent cough and doc thinks it is probably from the Nivo, but it is manageable for now. I also have pain in my hips…but again it seems manageable. 

      Like to hear from anyone who has experienced/read about the new regimen,

      Thanks and keep trucking,

      Ted

       

    Viewing 4 reply threads
    • Replies
        • April 11, 2018 at 11:30 pm
        doragsda
        Participant

          My wife finished the 4 doses of ipi/nivo and has been on nivo alone for almost 6 months.  We spoke to Dr. Hamid about the 1X / month regimen and he did not recommend it.   He said approval was based on a fairly small study and he wanted to see more data before he would recommend it for her.   She has been doing very well as is.   She is stage 4 with two brain mets – one was resected and other was hit with gamma knife in August (along with resection cavity).   He essentially said, if it isn't broke, don't fix it.   I was concerned about moving her to the 4 week regimen as she is small (110 lb) and I thought the double dose might give her more serious side effects (she has had miniman side effects on the current regimen).   She was at her local oncologist today for her infusion and the infusion nurse said some patients have just moved to the 4 week, but they seem to be moving based on convenience (i.e. they have to travel some distance for their treatment).   The infusion center is literally about a thousand feet from our house, so we don't have that issue.

          • April 12, 2018 at 1:37 pm
          Hukill
          Participant

            I have had 42 nivo treatments. My last was the new double dose every 4 weeks. I didn't really notice much difference but the first week my dr did call me several times checking on me as several patients who got the double had to be admitted to the hospital for side effects. I have had 5 or 6 side effects the whole time but I think those originated from the yervoy at the beginning. I get my second double does tomorrow. My dr decided to try the double with me because my body has taken nivo pretty well and I live 2 1/2 hours away.

            • April 12, 2018 at 1:47 pm
            gopher38
            Participant

              I'm either getting the 480 nivo or 240 nivo + ipi.  If it's the double nivo, effects were pretty minor for me.

              • April 16, 2018 at 12:33 am
              jjk17
              Participant
                Ted! Im glad you posted this, because I was going to ask the same. I have been receiving Nivo every 2 weeks as well. We held off, at my last regular infusion, due to the fact I was having so many headaches and they wanted to pin point for sure if it was the medication. I knew it was due to how they were. So, just this last Friday the 13th I had #6 at my regular dose. Next 2 weeks they want to do the double dose, for 30 minutes. To say the least I am very apprehensive about this, but from the sounds of it, due to insurance purposes I dont have a choice. Would appreciate any input as well!
                • April 16, 2018 at 12:35 am
                jjk17
                Participant
                  Ted! Im glad you posted this, because I was going to ask the same. I have been receiving Nivo every 2 weeks as well. We held off, at my last regular infusion, due to the fact I was having so many headaches and they wanted to pin point for sure if it was the medication. I knew it was due to how they were. So, just this last Friday the 13th I had #6 at my regular dose. Next 2 weeks they want to do the double dose, for 30 minutes. To say the least I am very apprehensive about this, but from the sounds of it, due to insurance purposes I dont have a choice. Would appreciate any input as well!
              Viewing 4 reply threads
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