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Update – Stage IV to NED

Forums General Melanoma Community Update – Stage IV to NED

  • Post
    Eileensulliv
    Participant

      Good morning and happy new year! I have not posted in several months, but do read posts from time to time. I figured it was probably time for an update…

      I was diagnosed Stage IV in January 2015, which was a recurrence from my first time with melanoma in 2006, Stage I. In February 2015 I had surgery to remove the tumor from my back, and started the ipi/nivo trial at John's Hopkins. I could only tolerate one dose of the combo, and was hospitalized a few times due to what we now know is my new allergy to Ct scan contrast (never had an allergy in my life before IPi/nivo, now have a few new allergies). I continued on just nivo after a short break from the first dose of the combo, and had some side effects, all were manageable. Scan in December 2015 showed NED, but the next scan in February 2016 showed new nodules in my right lung again. Continued on nivo and still getting nivo every other week presently. 

      In February 2016 my blood sugar went completely wacky, and I was diagnosed with type II diabetes. My oncologist said I was probably on my way to diabetes on my own (at this point I was the heaviest I had ever been, I had stopped exercising, and had some unhealthy eating/drinking habits) but that the treatments might have just hurled me into it. My endochronoligist agreed, and got me started on twice per day insulin shots. That was a wake up call for me, and I started to make some lifestyle changes. Basically, watching what I eat and lots of exercise has helped me to lost close to 50 pounds since March 2016, and I am now transitioning from insulin shots to metformin pills! And hopefully someday I'll be able to even get off those! It is my goal to be able to actually RUN the Miles for Melanoma 5k in DC, which is usually in May… fingers crossed!

      Since I have the allergy to Ct scan contrast, we have switched to just doing PET scans on me for the time being. My latest PET in October showed NO sign of disease, to which I breathed a giant sigh of relief! My next scan is on January 30th, and I'll get the results on my 41st birthday, February 2nd… nothing but positive vibes here! If this next scan is still NED, I will get to finish nivo treatments in March, completing two full years of treatments. The thought of stopping treatments and not seeing my doctor and nurses every other week is somewhat terrifying, but of course also a great relief. There are mixed emotions, for sure, and I think that is what I am struggling with the most now. 

      I am (somewhat) cautiously optimistic, and have started making plans for my next steps in life. I'd like to move back to Chicago, and have even been looking into the possibility of having a baby! The docs at Hopkins said once I finish treatments they can get me into their fertility clinic to see if it's even possible for me now. Again, fingers crossed!

      Thats about it for now, sorry for the lengthy update! My prayers are with all of you. I have made some wonderful friends through this board and the MRF, and am looking forward to seeing some of you in 2017! 

       

      With hope,

      Eileen

    Viewing 14 reply threads
    • Replies
        Bubbles
        Participant

          Sorry for the difficult path, but overall that is really awesome news.  Your spirit of hope is an inspiration to us all.  Hang in there!  Best wishes for a fabulous 2017 and beyond.  celeste

          Bubbles
          Participant

            Sorry for the difficult path, but overall that is really awesome news.  Your spirit of hope is an inspiration to us all.  Hang in there!  Best wishes for a fabulous 2017 and beyond.  celeste

            Bubbles
            Participant

              Sorry for the difficult path, but overall that is really awesome news.  Your spirit of hope is an inspiration to us all.  Hang in there!  Best wishes for a fabulous 2017 and beyond.  celeste

              jbronicki
              Participant

                Wishing you only future happiness and continued NED Eileen!  I'm glad your treatment is working and good luck on the baby part as well!  Life is an emotional rollercoaster for sure!  Fingers crossed for you!

                jbronicki
                Participant

                  Wishing you only future happiness and continued NED Eileen!  I'm glad your treatment is working and good luck on the baby part as well!  Life is an emotional rollercoaster for sure!  Fingers crossed for you!

                  jbronicki
                  Participant

                    Wishing you only future happiness and continued NED Eileen!  I'm glad your treatment is working and good luck on the baby part as well!  Life is an emotional rollercoaster for sure!  Fingers crossed for you!

                    debwray
                    Participant

                      Hi Eileen,

                      Thanks for posting your story. It is great to hear good news .Please don't apologise for lengthy update- and great to hear that you are thinking positively about the future. Hope your dreams come true.

                      Deb

                      debwray
                      Participant

                        Hi Eileen,

                        Thanks for posting your story. It is great to hear good news .Please don't apologise for lengthy update- and great to hear that you are thinking positively about the future. Hope your dreams come true.

                        Deb

                        debwray
                        Participant

                          Hi Eileen,

                          Thanks for posting your story. It is great to hear good news .Please don't apologise for lengthy update- and great to hear that you are thinking positively about the future. Hope your dreams come true.

                          Deb

                          Mark_DC
                          Participant

                            Eileen thanks for the uodate, well done with you all your efforts, and thanks for helping make me more optimistc

                            Mark_DC
                            Participant

                              Eileen thanks for the uodate, well done with you all your efforts, and thanks for helping make me more optimistc

                              Mark_DC
                              Participant

                                Eileen thanks for the uodate, well done with you all your efforts, and thanks for helping make me more optimistc

                                Nicklindner
                                Participant

                                  Thank you for the update. It is wonderful to hear the good news. I pray things continue to go well for you 

                                  Nicklindner
                                  Participant

                                    Thank you for the update. It is wonderful to hear the good news. I pray things continue to go well for you 

                                    Nicklindner
                                    Participant

                                      Thank you for the update. It is wonderful to hear the good news. I pray things continue to go well for you 

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