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Scans show I’m still NED!!!!

Forums General Melanoma Community Scans show I’m still NED!!!!

  • Post
    Kim K
    Participant

      I also got a firm comitment on 6 month PET/CT whole body & brain MRI with and without contrast.  I go back in July unless anything pops up in the meantime.

      I also got a firm comitment on 6 month PET/CT whole body & brain MRI with and without contrast.  I go back in July unless anything pops up in the meantime.

      I also had to make sure they don't pull the "we can't give you your results over the phone and the Dr. is gone for the day" crap.  My doc was shocked when he heard they wouldn't tell me my results over the phone.  We already had a deal that it is fine to do so.  I mean it's not like because I am in medicine therefore I am being a pain, but rather, if there was something I would want to know everything PRIOR to my appt. so I can spend the time constructively developing a game plan that made sense.  I could spend the time more productively and have my questions lined up and research done PRIOR to my appt.  It didn't help that the receptionist at this particular branch office isn't the brightest crayon in the box…..

      I will recheck next week to ensure that it is the first thing that shows up is my Dr.'s consent to read me my results over the phone and or fax them to me as soon as they are reported.  Damn stupid beuracracy.  My doc did get a chuckle out of my Mela-sucka-noma shirt.  (The one that BG has).

      I also ran into my lung surgeon who seemed a little suprised I was still doing well.  If only I could be a fly on the wall at the next tumor board meeting…..

      I also can't wait for my new Sole 35 eliptical machine.  Now that I will be around for a while more, I guess I need to get my butt back in shape.  Jade my 5 y/o daughter insists Mommy is only fluffy and not fat.

    Viewing 23 reply threads
    • Replies
        Fen
        Participant

          absolutely phenomenal news! wishing you many miles of eliptical-ing!

          Fen
          Participant

            absolutely phenomenal news! wishing you many miles of eliptical-ing!

            lhaley
            Participant

              Fantastic news!!!!  

              It's ashame that your lung surgeon didn't realize that there is hope and surgery alone can work for many!!  Maybe now he will learn from you and become more aggressive without patients doing the asking!!

              Fluffy is ok, but it doesn't hurt to start working out.

              Enjoy, enjoy, enjoy!!!!!

              Linda

              lhaley
              Participant

                Fantastic news!!!!  

                It's ashame that your lung surgeon didn't realize that there is hope and surgery alone can work for many!!  Maybe now he will learn from you and become more aggressive without patients doing the asking!!

                Fluffy is ok, but it doesn't hurt to start working out.

                Enjoy, enjoy, enjoy!!!!!

                Linda

                KatyWI
                Participant

                  Rock and roll Kim, I am overjoyed!!!!!  Great news!  Can you hear the cheering from Wisconsin, where it's four degrees?

                  KatyWI

                  KatyWI
                  Participant

                    Rock and roll Kim, I am overjoyed!!!!!  Great news!  Can you hear the cheering from Wisconsin, where it's four degrees?

                    KatyWI

                    filbert
                    Participant

                      AT times like this you want to say "who pays the bills for all this fancy diagnostic equipment around here anyway…..please give me my results."   You want time to be prepared and have an intelligent conversation with the doctor when you see him.  Good luck and I also like the shirt.

                       

                      Phil

                      filbert
                      Participant

                        AT times like this you want to say "who pays the bills for all this fancy diagnostic equipment around here anyway…..please give me my results."   You want time to be prepared and have an intelligent conversation with the doctor when you see him.  Good luck and I also like the shirt.

                         

                        Phil

                        debbieVA
                        Participant

                          Hi Kim…

                           

                          That is terrific news….Love to hear success stories… God bless….

                           

                          Debbie Stage 4 NED (2006)

                          debbieVA
                          Participant

                            Hi Kim…

                             

                            That is terrific news….Love to hear success stories… God bless….

                             

                            Debbie Stage 4 NED (2006)

                            MaryD
                            Participant

                              Wow – that's great news Kim – Congrulations!  And yeah, you're going to be enjoying that new eliptical machine for some time to come!

                              Good for you for managing "the system" and mandating what you want and getting a scan schedule in place.   And you can tell your lung surgeon there are quite a few of us (me included) running around living life after having lung mets removed!

                              Enjoy!

                               

                              Mary

                              MaryD
                              Participant

                                Wow – that's great news Kim – Congrulations!  And yeah, you're going to be enjoying that new eliptical machine for some time to come!

                                Good for you for managing "the system" and mandating what you want and getting a scan schedule in place.   And you can tell your lung surgeon there are quite a few of us (me included) running around living life after having lung mets removed!

                                Enjoy!

                                 

                                Mary

                                NancyD
                                Participant

                                  What great news this is!  The magic words, NED!  Better yet, STILL NED!!!  

                                  Nancy D

                                  Stage 3B

                                  NancyD
                                  Participant

                                    What great news this is!  The magic words, NED!  Better yet, STILL NED!!!  

                                    Nancy D

                                    Stage 3B

                                    What great news Kim!  I have been awaiting your news and this is the best possible,  Yippee!

                                    Has it been determined that you are a "complete" responder or does that title come after 2-3 years out? 

                                    Congratulations on getting your scan schedule in place too, a reassuring check on things.  Have fun on your exercise machine.  I think I am going to check out a gym tomorrow.  I really miss the group aerobics classes.  Since moving here nothing has seemed "normal" so my goal is to start making that happen. 

                                    Oh I am so excited for you!

                                    Take care,

                                    Shelly stage IV, 7+ months on Roche b-raf trial

                                    What great news Kim!  I have been awaiting your news and this is the best possible,  Yippee!

                                    Has it been determined that you are a "complete" responder or does that title come after 2-3 years out? 

                                    Congratulations on getting your scan schedule in place too, a reassuring check on things.  Have fun on your exercise machine.  I think I am going to check out a gym tomorrow.  I really miss the group aerobics classes.  Since moving here nothing has seemed "normal" so my goal is to start making that happen. 

                                    Oh I am so excited for you!

                                    Take care,

                                    Shelly stage IV, 7+ months on Roche b-raf trial

                                      Tracy Chicago
                                      Participant

                                        Congratulations! I love hearing good news!

                                        Tracy Chicago
                                        Participant

                                          Congratulations! I love hearing good news!

                                        dawn dion
                                        Participant

                                          That is AWESOME!!!! Yea for you!  Where can i get one of those great shirts.

                                          dawn dion
                                          Participant

                                            That is AWESOME!!!! Yea for you!  Where can i get one of those great shirts.

                                            JakeinNY
                                            Participant

                                              Congratulations Kim.

                                              Best wishes for a long life.

                                              JakeinNY
                                              Participant

                                                Congratulations Kim.

                                                Best wishes for a long life.

                                                Hawaii Bob
                                                Participant

                                                  That's great news Kim….. I'm so happy for you and your daughters !

                                                   

                                                  Aloha,

                                                  Hawaii Bob

                                                  Hawaii Bob
                                                  Participant

                                                    That's great news Kim….. I'm so happy for you and your daughters !

                                                     

                                                    Aloha,

                                                    Hawaii Bob

                                                    ad2424
                                                    Participant

                                                      Hi Kim

                                                      I read your profile and have some questions.

                                                      I am stage 4 NED and trying to decide to wait and watch or do a trial (most prob Weber PD 1 in FL or GM-CSF off label).

                                                      What drugs were used in your 02-06 trial?

                                                      Why did you choose to do IL2/INF (sorry, forgot what you used) most recently if you were NED?

                                                      Thanks.

                                                      Steven ([email protected])

                                                       

                                                       

                                                      ad2424
                                                      Participant

                                                        Hi Kim

                                                        I read your profile and have some questions.

                                                        I am stage 4 NED and trying to decide to wait and watch or do a trial (most prob Weber PD 1 in FL or GM-CSF off label).

                                                        What drugs were used in your 02-06 trial?

                                                        Why did you choose to do IL2/INF (sorry, forgot what you used) most recently if you were NED?

                                                        Thanks.

                                                        Steven ([email protected])

                                                         

                                                         

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