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Did ipi plus nivo work for you?
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Did ipi plus nivo work for you?

› Forums › General Melanoma Community › Did ipi plus nivo work for you?

  • Post
    • April 20, 2017 at 2:12 am
    baesill
    Participant

      Hi 

      I'm a stage 4. It's been 9 days since my first infusion and I just feel like it's not working yet. I still have all my symptoms from before therapy and they are actually starting to get worse slightly. I also just had a chest X-ray and everything that was in my lungs is still there. Does absence of an early response hurt my prognosis?

      Did ipi plus nivo work for you? If not what was your second line? Did you feel like you could tell it wasn't working before scans? If yes, when did you think it started working? Or were you surprised by good scan? 

      The reality is that this combo doesn't work for everyone, and want to hear it all. People sharing experiences here has helped me so much.

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    • Replies
        • April 20, 2017 at 2:42 am
        jennunicorn
        Participant

          9 days is very little time, you gotta give it more time to work. You'll have 4 total infusions with both Ipi/Nivo and then it goes to Nivo alone every other week for a long period.. that amout of time is up to the doc.. mine has me on it for a year. It has worked for me. I know how depressing this diagnosis can be. Especially in the midst of scans and biopsies that just bring bad news. But, there is hope and this drug combo is one of the best to give you that hope. Hang in there, it's not easy, but living each day with a positive attitude and making the most of every moment we have is the best thing we can do right now. Take it one day at a time, try not to let your mind go to the future wondering whether or not this drug will work or what the next scan will look like. 

          Wishing you all the best,

            • April 20, 2017 at 8:03 am
            Johnjk04
            Participant

              January 2012 – melanoma in brain, lungs, liver, gall bladder and adrenal gland.

              August – 2012  NED. So far no return of the cancer.

              • April 20, 2017 at 8:03 am
              Johnjk04
              Participant

                January 2012 – melanoma in brain, lungs, liver, gall bladder and adrenal gland.

                August – 2012  NED. So far no return of the cancer.

              • April 20, 2017 at 12:47 pm
              Hukill
              Participant

                You got to give it some time to work. The question you need to ask yourself is "do I have any signs of side effects"? Has the rash started? If you are having any side effects the drugs are working. It may still be a little early for side effects. I got the rash the second week and was so happy. If you have a reaction to the drugs they will work, how much only time will tell. I have been on these drugs for going on 10 months and started with 7 tumors in my lungs and now have only 1 thast is less than 2mm in size and could even be scar tissue from the tumor. You have to be patient.

                  • April 20, 2017 at 4:32 pm
                  jennunicorn
                  Participant

                    Not everyone gets a rash, so don't over worry if you don't get one. I am a responder and never got a rash.

                  • April 21, 2017 at 1:40 pm
                  newmanmark
                  Participant

                    I have been on the combo since December.  I've had some minor complications but the tumour shrank to half of it's size after only 3 treatments.  I will have another scan in June.  Give it some time and hang in there!

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