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Almost NED
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Almost NED

› Forums › General Melanoma Community › Almost NED

  • Post
    • July 18, 2017 at 5:25 pm
    sister of patient
    Participant

      Hey all – we've had great news today to share, CT last week and results today are astounding. While onc won't say NED, we're just about there insomuch as splenic lesions appear to have resolved and last remaining liver met is gone. There's a couple of little things lighting up that they want to watch (2 new tiny spots, one in each lung but they could be anything and what is likely scarring in the spleen) so, yeah, it seems the monster is just about spent.

      Onc did admit today that Leisa's tumour burden was just about the heaviest she had ever dealt with to have such a successful outcome – we kind of suspected that. She will continue Nivo for another 3 months and of course, have ongoing scans but also received a schedule now to start a slow taper from the steroids too.

      So, it's a great day for us here (for some reason I can't stop crying – tears of joy though!!) and I sincerely wish everyone on here still suffering will soon get similar results and news!!

      Best wishes to all!

      Barb

       

    Viewing 9 reply threads
    • Replies
        • July 18, 2017 at 6:18 pm
        Nicklindner
        Participant

          That is incredible Barb!  Thank you for sharing this amazing news with us. 

          Anything special that you guys did?  Diet, complimentary treatment, etc?

            • July 18, 2017 at 9:58 pm
            sister of patient
            Participant

              Thank you! No, she really didn't do anything special diet-wise (couldn't really eat much for close to a year) but made sure to get yogurt in there as much as possible, takes turmeric daily and eliminated as much sugar as possible. There was no other complementary treatment, no surgery (here, Canada, they are really loathe to cut). Best wishes to you Anon! 

            • July 18, 2017 at 8:24 pm
            jennunicorn
            Participant

              So happy to hear this Barb! Can't wait until your sister can officially say NED!

                • July 18, 2017 at 9:59 pm
                sister of patient
                Participant

                  Thank you Jenn, so much!!! Can't wait 'til you hear it too!!!

                  Our best to you, always!!

                  Barb

                • July 18, 2017 at 8:27 pm
                Newmanbell
                Participant
                  I just love posts like these, gives me hope for my husband. Congratulations.
                  Donna
                    • July 18, 2017 at 10:02 pm
                    sister of patient
                    Participant

                      Thank you Donna! Our best wishes for complete success going out to you and your husband!!

                      Barb

                    • July 18, 2017 at 10:05 pm
                    sister of patient
                    Participant

                      P.S. – We are celebrating tonight and breaking the "sugar rule" – grabbed an icecream cake from DQ and my sister had them write on it "F U cancer!" 🙂

                      • July 19, 2017 at 7:35 am
                      Jubes
                      Participant

                        Wonderful news. Maybe some champagne to go with the ice cream cake!

                          • July 19, 2017 at 11:08 pm
                          sister of patient
                          Participant

                            Thank you Anne-Louise!! We did have a little shot of liqueur with it 🙂 Take care!

                            Barb

                          • July 19, 2017 at 7:36 am
                          Jubes
                          Participant

                            Wonderful news. Maybe some champagne to go with the ice cream cake!

                            • July 19, 2017 at 1:04 pm
                            jenny22
                            Participant

                              Congratulations Barb….wonderful news for your sister.  I love her message on the ice cream cake!!!

                              Enjoy the good news, and cant wait until you can say NED.

                               

                              Best,

                              jenny

                                • July 19, 2017 at 11:12 pm
                                sister of patient
                                Participant

                                  Thanks so much Jenny and I'm glad you liked her message – that was daring for my prim & proper, schoolteacher sister, LOL. We can't wait for the official word either – it will almost be anti-climactic when it comes 🙂 Our best to you!

                                  Barb

                                • July 19, 2017 at 1:04 pm
                                jenny22
                                Participant

                                  Congratulations Barb….wonderful news for your sister.  I love her message on the ice cream cake!!!

                                  Enjoy the good news, and cant wait until you can say NED.

                                   

                                  Best,

                                  jenny

                                  • July 19, 2017 at 1:13 pm
                                  ToddG
                                  Participant

                                    Fantastic news!  Always great reading about this kind of progress, giving hope to the rest of us!

                                     

                                    Todd

                                      • July 19, 2017 at 11:21 pm
                                      sister of patient
                                      Participant

                                        Thank you so much Todd!! And may the treatment keep kicking ass for you too!!! Best wishes for that continued success!!

                                        Barb 

                                      • July 19, 2017 at 6:53 pm
                                      DZnDef
                                      Participant

                                        Hey Barb, I cannot adequately express how thrilled I am for you and your sister.  Congratulations!  Enjoy the cake!  Relax and let the worry melt away.

                                        Cheers!

                                        Maggie

                                          • July 19, 2017 at 11:32 pm
                                          sister of patient
                                          Participant

                                            Ahhh – thank you so much Maggie! It is easier said than done for sure (the relax and not worry part) as you mentioned recently!! But we're thrilled to be where we are today and we are enjoying the cake 🙂 I'm going to be watching for your official "clear" too – may the next scan be it!!! Best thoughts for you always!!

                                            Barb

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