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Help on treatment decision (Nivo/Ipi/cyberknife)

Forums General Melanoma Community Help on treatment decision (Nivo/Ipi/cyberknife)

  • Post
    magnus31
    Participant
      Dear all,

      I am stage IV with two visible lesions in close to lung and trachea, respectively.

      Ipilimimumab was the initial systemic treatment but I was switched to Nivolumab 20 months ago due to lack of response. Nivolumab has worked well and has shrunk or eliminated all dozen-or-so lesions visible initially.

      I am now left with two lesions: A stable, smaller lung lesion and a 40 mm lesion close to the trachea which has grown 10 mm over the past 3 months. Doctors believe it does not respond to the Nivolumab treatment.

      I have no pain or problems due to current illness.

      I am now faced with the following options:

      1/ Add in Ipilimumab to current Nivolumab treatment and see what bitjerapht could do

      2/ Attack trachea lesion with cyberknife, continue Nivolumab

      3/ Attack trachea lesion with cyberknife, continue Nivolumab and asd in four sessions of Ipilimumab

      My primary concerns below:
      – I have heard that radiotherapy can make illness more aggressive but then again cyberknife technically is something else.
      – Will adding in Ipilimumab “confuse” my immune system which has worked so well with Nivolumab alone?
      – Will going “all in” with all three treatments (Nivo + Ipi + cyberknife) be too much at this stage, as we can always revert to cyberknife at a later stage?
      – If not opting for cyberknife at this stage, do I risk the lesion growing too large for cyberknife treatment further down the line?

      I hope you are all coping well and thank you for sharing your thoughts.

      Magnus

    Viewing 11 reply threads
    • Replies
        Johnjk04
        Participant

          My opinion – "all in"

          January 2012 tumors brain, lungs, liver, gall bladder and adrenal gland

          3 Cyber Knifes to brain, 2 years of ippi / nivo

          Effective –  August 2012 to present   NED

           

          John

          Johnjk04
          Participant

            My opinion – "all in"

            January 2012 tumors brain, lungs, liver, gall bladder and adrenal gland

            3 Cyber Knifes to brain, 2 years of ippi / nivo

            Effective –  August 2012 to present   NED

             

            John

            Johnjk04
            Participant

              My opinion – "all in"

              January 2012 tumors brain, lungs, liver, gall bladder and adrenal gland

              3 Cyber Knifes to brain, 2 years of ippi / nivo

              Effective –  August 2012 to present   NED

               

              John

              Bubbles
              Participant

                There is a great deal of data demonstrating the benefit of immunotherapy combined with radiation when treating melanoma….no matter if we are talking about mets to the brain or elsewhere!!  Radiation is radiation whether administered via cyber knife or srs. There are a zillion articles noting these results. Here is just the latest post…with links within that lead to even more:

                 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html

                I wish you well. Celeste

                Bubbles
                Participant

                  There is a great deal of data demonstrating the benefit of immunotherapy combined with radiation when treating melanoma….no matter if we are talking about mets to the brain or elsewhere!!  Radiation is radiation whether administered via cyber knife or srs. There are a zillion articles noting these results. Here is just the latest post…with links within that lead to even more:

                   http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html

                  I wish you well. Celeste

                  Bubbles
                  Participant

                    There is a great deal of data demonstrating the benefit of immunotherapy combined with radiation when treating melanoma….no matter if we are talking about mets to the brain or elsewhere!!  Radiation is radiation whether administered via cyber knife or srs. There are a zillion articles noting these results. Here is just the latest post…with links within that lead to even more:

                     http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html

                    I wish you well. Celeste

                    Polymath
                    Participant

                      Hi Magnus,

                      I'm a fan of the triple-play, ipi/nivo/radiation.  After progressing on BRAF inhibitors including TAF/MEK combo, ipi, then pembro, it was not unitil I did the ipi/nivo combo and had radiation simultaneously that I have achieved "partial responder" status (systemic).  In my case the smaller tumors, not directly treated with radiation responded although I have a very large tumor that is still stubborn, but may have at least become stable.

                      That said, the issue with radiation is the collateral damage.  In both of the areas treated with large subcutaneous tumors, I now have what is probably permanent damage to nearby organs and tissues.  So although I do believe in the triple-play, be sure to consult with one or more radiation oncologists and ask hard questions about possible collateral damage.  In some cases, its just not worth the risk.  Best to you in the battle.

                      Gary

                      Polymath
                      Participant

                        Hi Magnus,

                        I'm a fan of the triple-play, ipi/nivo/radiation.  After progressing on BRAF inhibitors including TAF/MEK combo, ipi, then pembro, it was not unitil I did the ipi/nivo combo and had radiation simultaneously that I have achieved "partial responder" status (systemic).  In my case the smaller tumors, not directly treated with radiation responded although I have a very large tumor that is still stubborn, but may have at least become stable.

                        That said, the issue with radiation is the collateral damage.  In both of the areas treated with large subcutaneous tumors, I now have what is probably permanent damage to nearby organs and tissues.  So although I do believe in the triple-play, be sure to consult with one or more radiation oncologists and ask hard questions about possible collateral damage.  In some cases, its just not worth the risk.  Best to you in the battle.

                        Gary

                        Polymath
                        Participant

                          Hi Magnus,

                          I'm a fan of the triple-play, ipi/nivo/radiation.  After progressing on BRAF inhibitors including TAF/MEK combo, ipi, then pembro, it was not unitil I did the ipi/nivo combo and had radiation simultaneously that I have achieved "partial responder" status (systemic).  In my case the smaller tumors, not directly treated with radiation responded although I have a very large tumor that is still stubborn, but may have at least become stable.

                          That said, the issue with radiation is the collateral damage.  In both of the areas treated with large subcutaneous tumors, I now have what is probably permanent damage to nearby organs and tissues.  So although I do believe in the triple-play, be sure to consult with one or more radiation oncologists and ask hard questions about possible collateral damage.  In some cases, its just not worth the risk.  Best to you in the battle.

                          Gary

                          JoshF
                          Participant

                            I agree with Gary…while there are potential risk and side effects, going at it from every direction is best.

                            JoshF
                            Participant

                              I agree with Gary…while there are potential risk and side effects, going at it from every direction is best.

                              JoshF
                              Participant

                                I agree with Gary…while there are potential risk and side effects, going at it from every direction is best.

                            Viewing 11 reply threads
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