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problem with staging due to stubborn patient
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problem with staging due to stubborn patient

› Forums › General Melanoma Community › problem with staging due to stubborn patient

  • Post
    • February 11, 2017 at 7:47 pm
    BarbaraF
    Participant

      I fear that, due to lack of information, this patient who is diagnosed at Stage III is really Stage IV and could get better meds (MK-3475 Pembro) right away. Is it true that Pembro can be prescribed for Stage IV? 

      background: After surviving TCC cancer on the kidney 12 years ago, and, after extensive chemo emerging with No Evidence of Disease, he was diagnosed in 2011 with Barrett's esophagus, a pre-cancerous condition. His oncologist told him to FOR SURE continue with the endoscopy checkups. He has the symptoms of Barrett's disease.  

      In October 2016 he had surgery to remove invasive malignant melanoma and was Stage IIC. PET scans were clear. Three months later, Feb 1 2017, had another resection for melanomas that returned quickly, and now he is Stage IIIC.

      He wants to get MK-3475 (Pembro) but Stage III can't get it unless he is in a randomized clinical trial (S1404) which might give him IPI instead. Is it true that Pembro can be prescribed for Stage 4? Wouldn't it be better to get a Stage 4 diagnosis NOW and get on the Pembro NOW rather than wait to be put on the trial, be randomized to IPI , and discover that because IPI didn't work and he is now Stage 4? 

       

       

    Viewing 11 reply threads
    • Replies
        • February 11, 2017 at 7:49 pm
        BarbaraF
        Participant

          I forgot to say that the patient REFUSED to have the endoscopies that his doctors ordered and until recently denied any suggestion that he had Barrett's esophagus. 

          • February 11, 2017 at 7:49 pm
          BarbaraF
          Participant

            I forgot to say that the patient REFUSED to have the endoscopies that his doctors ordered and until recently denied any suggestion that he had Barrett's esophagus. 

              • February 11, 2017 at 8:35 pm
              debwray
              Participant

                Hi Barbara,

                Not sure that positive endoscopy would qualify patient for immunotherapy umless melanoma identified.

                BUT- have a look at this- https://www.crcwm.org/Attachments/SWOG%20S1404%20FastFacts.pdf

                It explains details of pre study screening tests undertaken on page 5 . It would include scans to rule out stage 4 disease- so if that was unfortunately the case the pre study tests would aid diagnosis and staging and maybe get the patient access to pembro ??  Procedures and screening likely to be the same regardless of the trial location.

                Best of luck

                Deb

                • February 11, 2017 at 8:35 pm
                debwray
                Participant

                  Hi Barbara,

                  Not sure that positive endoscopy would qualify patient for immunotherapy umless melanoma identified.

                  BUT- have a look at this- https://www.crcwm.org/Attachments/SWOG%20S1404%20FastFacts.pdf

                  It explains details of pre study screening tests undertaken on page 5 . It would include scans to rule out stage 4 disease- so if that was unfortunately the case the pre study tests would aid diagnosis and staging and maybe get the patient access to pembro ??  Procedures and screening likely to be the same regardless of the trial location.

                  Best of luck

                  Deb

                  • February 11, 2017 at 8:35 pm
                  debwray
                  Participant

                    Hi Barbara,

                    Not sure that positive endoscopy would qualify patient for immunotherapy umless melanoma identified.

                    BUT- have a look at this- https://www.crcwm.org/Attachments/SWOG%20S1404%20FastFacts.pdf

                    It explains details of pre study screening tests undertaken on page 5 . It would include scans to rule out stage 4 disease- so if that was unfortunately the case the pre study tests would aid diagnosis and staging and maybe get the patient access to pembro ??  Procedures and screening likely to be the same regardless of the trial location.

                    Best of luck

                    Deb

                  • February 11, 2017 at 7:49 pm
                  BarbaraF
                  Participant

                    I forgot to say that the patient REFUSED to have the endoscopies that his doctors ordered and until recently denied any suggestion that he had Barrett's esophagus. 

                    • February 11, 2017 at 8:26 pm
                    Janner
                    Participant

                      The only way to get a stage IV diagnosis is being stage 4 melanoma.  Not stage 4 Barrett's esophagus if that is what you are implying.  That would likely call for different drugs altogether.  Each disease is staged separately.   If his melanoma isn't in an organ or unresectable, then he's stage III and won't qualify for stage 4 drugs.

                        • February 23, 2017 at 2:23 am
                        BarbaraF
                        Participant

                          thanks for the help!

                        • February 11, 2017 at 8:26 pm
                        Janner
                        Participant

                          The only way to get a stage IV diagnosis is being stage 4 melanoma.  Not stage 4 Barrett's esophagus if that is what you are implying.  That would likely call for different drugs altogether.  Each disease is staged separately.   If his melanoma isn't in an organ or unresectable, then he's stage III and won't qualify for stage 4 drugs.

                          • February 11, 2017 at 8:26 pm
                          Janner
                          Participant

                            The only way to get a stage IV diagnosis is being stage 4 melanoma.  Not stage 4 Barrett's esophagus if that is what you are implying.  That would likely call for different drugs altogether.  Each disease is staged separately.   If his melanoma isn't in an organ or unresectable, then he's stage III and won't qualify for stage 4 drugs.

                            • February 11, 2017 at 9:31 pm
                            jennunicorn
                            Participant

                              Getting in the trial is a good idea. Even if he gets Ipi, a lot of people have been helped by Ipi and remain NED because of Ipi, so it's not a bad scenario either way really. He's not stage 4 if he doesn't have melanoma spread to other organs. If he didn't have surgery to remove the most recent melanoma recurrence that made him 3C, then his onc could have called him "unresectable" which would give him access to all drugs without a trial. But, too late for that now, so I would go for the trial.

                                • February 23, 2017 at 2:25 am
                                BarbaraF
                                Participant

                                  It never occurred to us not to remove the melanoma. Wouldn't that have been even more dangerous? And how long after you discover a potential melanoma can you wait to get it biopsied? Patient seems to think it's OK to wait two weeks for the next dermatologist appointment. i think he oughta go pronto. 

                                  • February 23, 2017 at 2:29 am
                                  BarbaraF
                                  Participant

                                    It never occurred to us not to remove the melanoma. Wouldn't that have been even more dangerous? And how long after you discover a potential melanoma can you wait to get it biopsied? Patient seems to think it's OK to wait two weeks for the next dermatologist appointment. i think he oughta go pronto. 

                                  • February 11, 2017 at 9:31 pm
                                  jennunicorn
                                  Participant

                                    Getting in the trial is a good idea. Even if he gets Ipi, a lot of people have been helped by Ipi and remain NED because of Ipi, so it's not a bad scenario either way really. He's not stage 4 if he doesn't have melanoma spread to other organs. If he didn't have surgery to remove the most recent melanoma recurrence that made him 3C, then his onc could have called him "unresectable" which would give him access to all drugs without a trial. But, too late for that now, so I would go for the trial.

                                    • February 11, 2017 at 9:31 pm
                                    jennunicorn
                                    Participant

                                      Getting in the trial is a good idea. Even if he gets Ipi, a lot of people have been helped by Ipi and remain NED because of Ipi, so it's not a bad scenario either way really. He's not stage 4 if he doesn't have melanoma spread to other organs. If he didn't have surgery to remove the most recent melanoma recurrence that made him 3C, then his onc could have called him "unresectable" which would give him access to all drugs without a trial. But, too late for that now, so I would go for the trial.

                                      • February 12, 2017 at 10:57 pm
                                      stevenallenschwartz
                                      Participant

                                        Unfortiunatley the only way to get pembro is to be stage 4. There are clinical trials that utilize pembro in stage 3 and that is what i would do.

                                         

                                        • February 12, 2017 at 10:57 pm
                                        stevenallenschwartz
                                        Participant

                                          Unfortiunatley the only way to get pembro is to be stage 4. There are clinical trials that utilize pembro in stage 3 and that is what i would do.

                                           

                                          • February 12, 2017 at 10:57 pm
                                          stevenallenschwartz
                                          Participant

                                            Unfortiunatley the only way to get pembro is to be stage 4. There are clinical trials that utilize pembro in stage 3 and that is what i would do.

                                             

                                              • February 23, 2017 at 2:29 am
                                              BarbaraF
                                              Participant

                                                I read your case. Thanks for being helpful and good luck!

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