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Update

› Forums › General Melanoma Community › Update

  • Post
    • May 10, 2014 at 5:10 pm
    JoshF
    Participant

      Hi all-

      well it's been 3 months since I had scan after completing trial of ipi then HD IL-2. I did ipi Oct-Dec last year and then IL2 in Jan. Scan on Feb 17…NED. Scan yesterday….NED!!!! Obviously I'm very happy but I can never lose uncertainty. First question I ask is what is prognosis in comparison to other patients who've responded like me. Is it the IL2 or ipi…or both???? It's like I almost feel guilty or it's too good to be true. Am I crazy or is this normal? 

      So my oncologist gave me option of scan in mid August or push it out to beginning of Oct. she felt comfortable waiting as she said there is no disease to track. Am I crazy for doing this? The rationale is over exposure to radiation as like many of you…I've had my fair share of runs through the tube! The study I'm on requires scan in Oct-Nov as this is the 1yr time frame.

      i hope everyone here is well. This site and many of the people have been a tremendous resource & support. I can only hope that treatments that have a broader scope in helping people are in the near future….c'mon PD-1!!!!

      josh

    Viewing 14 reply threads
    • Replies
        • May 10, 2014 at 5:57 pm
        SABKLYN
        Participant

          Great news Josh!  I don't think the 4-6 weeks would make much difference.  However, like many things we have to decide with this disease, it's all about what makes you most comfortable.  

          • May 10, 2014 at 5:57 pm
          SABKLYN
          Participant

            Great news Josh!  I don't think the 4-6 weeks would make much difference.  However, like many things we have to decide with this disease, it's all about what makes you most comfortable.  

              • May 10, 2014 at 8:51 pm
              sofistef
              Participant

                Josh,

                this is wonderful news! Congratulations and stay always NED! I followed your story closely, I also became stage 4 about the same time as you did, I'm not NED yet, I only have a tumor in a hilar node, that stayed the unchanged since the begining of treatment in November! I'm on Ippi/ Nivo/ippi +nivo trial and hope to see NED on my scans soon!

                Dana

                • May 10, 2014 at 9:42 pm
                MattF
                Participant

                  Josh 

                  Great news….

                  Dana I too became stage IV last year…..

                  I had a Scan yesterday May 9 2012…..get results next week.

                   

                  I'm on the BRAK combo…5th month on the Meds.

                   

                  last scan showed…..smaller lesions on femur, humurus, rib, cage, tail bone, etc….so hoping for continued  shrinkage or stable on this one.

                  Stay Well.

                  Matt

                  • May 10, 2014 at 9:42 pm
                  MattF
                  Participant

                    Josh 

                    Great news….

                    Dana I too became stage IV last year…..

                    I had a Scan yesterday May 9 2012…..get results next week.

                     

                    I'm on the BRAK combo…5th month on the Meds.

                     

                    last scan showed…..smaller lesions on femur, humurus, rib, cage, tail bone, etc….so hoping for continued  shrinkage or stable on this one.

                    Stay Well.

                    Matt

                    • May 10, 2014 at 9:42 pm
                    MattF
                    Participant

                      Josh 

                      Great news….

                      Dana I too became stage IV last year…..

                      I had a Scan yesterday May 9 2012…..get results next week.

                       

                      I'm on the BRAK combo…5th month on the Meds.

                       

                      last scan showed…..smaller lesions on femur, humurus, rib, cage, tail bone, etc….so hoping for continued  shrinkage or stable on this one.

                      Stay Well.

                      Matt

                      • May 10, 2014 at 8:51 pm
                      sofistef
                      Participant

                        Josh,

                        this is wonderful news! Congratulations and stay always NED! I followed your story closely, I also became stage 4 about the same time as you did, I'm not NED yet, I only have a tumor in a hilar node, that stayed the unchanged since the begining of treatment in November! I'm on Ippi/ Nivo/ippi +nivo trial and hope to see NED on my scans soon!

                        Dana

                        • May 10, 2014 at 8:51 pm
                        sofistef
                        Participant

                          Josh,

                          this is wonderful news! Congratulations and stay always NED! I followed your story closely, I also became stage 4 about the same time as you did, I'm not NED yet, I only have a tumor in a hilar node, that stayed the unchanged since the begining of treatment in November! I'm on Ippi/ Nivo/ippi +nivo trial and hope to see NED on my scans soon!

                          Dana

                        • May 10, 2014 at 5:57 pm
                        SABKLYN
                        Participant

                          Great news Josh!  I don't think the 4-6 weeks would make much difference.  However, like many things we have to decide with this disease, it's all about what makes you most comfortable.  

                          • May 12, 2014 at 12:02 am
                          joy_
                          Participant

                            So happy for you!! Thanks for sharing your good news!

                            • May 12, 2014 at 12:02 am
                            joy_
                            Participant

                              So happy for you!! Thanks for sharing your good news!

                              • May 12, 2014 at 12:02 am
                              joy_
                              Participant

                                So happy for you!! Thanks for sharing your good news!

                                • May 12, 2014 at 12:54 pm
                                Tina D
                                Participant

                                  WOW! This is awesome 🙂

                                  Glad you shared!!

                                  No advice for the scans, that is always such a challenge to know. Pretty sure I glow when the lights are off.

                                  I am just so glad you have gotten such a tremendous report!!!

                                  Tina

                                  • May 12, 2014 at 12:54 pm
                                  Tina D
                                  Participant

                                    WOW! This is awesome 🙂

                                    Glad you shared!!

                                    No advice for the scans, that is always such a challenge to know. Pretty sure I glow when the lights are off.

                                    I am just so glad you have gotten such a tremendous report!!!

                                    Tina

                                    • May 12, 2014 at 12:54 pm
                                    Tina D
                                    Participant

                                      WOW! This is awesome 🙂

                                      Glad you shared!!

                                      No advice for the scans, that is always such a challenge to know. Pretty sure I glow when the lights are off.

                                      I am just so glad you have gotten such a tremendous report!!!

                                      Tina

                                      • May 12, 2014 at 3:28 pm
                                      kpcollins31
                                      Participant

                                        Congratulations, Josh – great news to hear!

                                        Kevin

                                         

                                        • May 12, 2014 at 3:28 pm
                                        kpcollins31
                                        Participant

                                          Congratulations, Josh – great news to hear!

                                          Kevin

                                           

                                          • May 12, 2014 at 3:28 pm
                                          kpcollins31
                                          Participant

                                            Congratulations, Josh – great news to hear!

                                            Kevin

                                             

                                            • May 13, 2014 at 12:29 am
                                            JerryfromFauq
                                            Participant

                                              Love it!!  I would give the combination a lot of credit.  Understand about the watching for excess radiation.  Even though I have innumerable stable tumors I only get scanned every six months.  (as long as the tumor on my neck doen't start growing again! I shrunk from a nodule to flat about 5 years ago!  Ssosmetimes the other shoe never drops!!!) 

                                               

                                               

                                              • May 13, 2014 at 12:29 am
                                              JerryfromFauq
                                              Participant

                                                Love it!!  I would give the combination a lot of credit.  Understand about the watching for excess radiation.  Even though I have innumerable stable tumors I only get scanned every six months.  (as long as the tumor on my neck doen't start growing again! I shrunk from a nodule to flat about 5 years ago!  Ssosmetimes the other shoe never drops!!!) 

                                                 

                                                 

                                                  • May 13, 2014 at 6:03 pm
                                                  Brendan
                                                  Participant

                                                    Great news, Josh!  Congratulations.  Thanks for sharing.

                                                    Brendan

                                                    • May 13, 2014 at 6:03 pm
                                                    Brendan
                                                    Participant

                                                      Great news, Josh!  Congratulations.  Thanks for sharing.

                                                      Brendan

                                                      • May 13, 2014 at 6:03 pm
                                                      Brendan
                                                      Participant

                                                        Great news, Josh!  Congratulations.  Thanks for sharing.

                                                        Brendan

                                                      • May 13, 2014 at 12:29 am
                                                      JerryfromFauq
                                                      Participant

                                                        Love it!!  I would give the combination a lot of credit.  Understand about the watching for excess radiation.  Even though I have innumerable stable tumors I only get scanned every six months.  (as long as the tumor on my neck doen't start growing again! I shrunk from a nodule to flat about 5 years ago!  Ssosmetimes the other shoe never drops!!!) 

                                                         

                                                         

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