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NEDnotDead

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      • January 16, 2019 at 7:08 pm
      NEDnotDead
      Participant

        Hi Tony,

        I believe my oncologist at the Abbotsford Cancer Center will also have patients involved in this trial. I seem to be responding to the Nivo maintenance finally so will keep my fingers crossed and keep an eye on this trial.

        Best,

        Chris

        • January 9, 2019 at 1:03 am
        NEDnotDead
        Participant

          Hi Mike, 

          Glad to here you are recovering after your surgery, and absolutely us Stage 4 peeps have lots to be grateful for.  

          All the best for 2019!

          Chris

          • October 31, 2018 at 5:37 pm
          NEDnotDead
          Participant

            Good Luck Mike! You got this!!

            • October 5, 2018 at 6:29 pm
            NEDnotDead
            Participant
              Good luck Nick!
              • October 4, 2018 at 9:04 pm
              NEDnotDead
              Participant

                I was switched to monthly at 7 months and have had 3 double doses. Not much of a change other then the fatigue lasting up to a week instead of a few days. It frees me up to travel back to be with family between treatments.

                • January 15, 2019 at 4:35 pm
                NEDnotDead
                Participant

                  Fingers and toes crossed for you Tyais!

                  • January 10, 2019 at 9:14 pm
                  NEDnotDead
                  Participant

                    Thanks Barb, May I ask how long it took her to achieve NED?

                    • January 9, 2019 at 3:46 pm
                    NEDnotDead
                    Participant

                      Thank you

                      • January 9, 2019 at 3:45 pm
                      NEDnotDead
                      Participant

                        Thank you!

                        • January 9, 2019 at 3:44 pm
                        NEDnotDead
                        Participant

                          Thanks Celeste, after weeks of worry over increased back pain, this is much better news then I was expecting.

                          • January 9, 2019 at 3:41 pm
                          NEDnotDead
                          Participant

                            Thanks MelMel, here's hoping we both achieve NED in 2019!

                            • October 5, 2018 at 6:08 pm
                            NEDnotDead
                            Participant
                              Crazy how we always want better, but your LDH was probably never lower then 220 before cancer. Like who checks there LDH once a month other than melanoma patients.
                              • October 5, 2018 at 5:18 pm
                              NEDnotDead
                              Participant
                                Hi Heidi,

                                Thanks for sharing. What was your blood work like during treatment? One thing I should mention is that my ldh was 1467 before treatment and has not been over 150 for the past 5 months. My blood work has often been described as pristine!

                                Chris

                                • October 5, 2018 at 3:31 pm
                                NEDnotDead
                                Participant
                                  Hi Celeste,

                                  I appreciate your wealth of knowledge and find your blog incredibly helpful.

                                  I did get 4 treatments of the combo at the beginning and it seemed to stop the disease in its tracks. The CT scans consistently show no change in size of the 3 tumors in my liver, tumors on both of my adrenal glands and two involved lymph nodes in each armpit. I had a lot of bone mets which I believe are gone, but this can’t be verified by the CT scans.

                                  My oncologist doesn’t share much with me and I find this frustrating. Maybe this is intentional, but as you know, makes us seek information from other sources.

                                  Thanks again for being you!

                                  Chris

                                  • October 5, 2018 at 2:43 pm
                                  NEDnotDead
                                  Participant
                                    Hi Ed, That is very encouraging to hear. I have not had a pet scan since the beginning so I have no idea what is happening to all my bone mets. All I do know is that I was loaded with cancer upon diagnosis, partial paralysis due to monster tumors on my hips and not feeling very well in general. I had radiation treatment to save my legs and started on the combo ipi/nivo in January, which seemed to stop the disease in its tracks. Today I am living a normal and active life with no pain and am extremely greatful.
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