Disappointment beyond belief

Forums General Melanoma Community Disappointment beyond belief

  • Post
    SOLE
    Participant

      Back from my oncologist appt. I should say right away that I live in Canada.

      All she wanted to talk about was adjuvant treatment in light of what is accepted by Health Canada. Hear that: interferon or watch and wait or c'inical trials but I got to have a CLND. No Ipi available in Canada as adjuvant for stage 3… And the triials offered now are pembro-interferon or placebo-vaccine.

      I am completely lost. Even with my light tumor burden, she could not pass by the fact I am a 3B she stood firm that my chances are 50-50. Not supportive is an euphemism. Did not want to expand on anything else…

      I wanted to finally get support in this battle and I got the complete opposite.

      She seemed young like in her 30s.

      Anybody has some solid melanoma specialist name to give me in the Montreal area…

      And only 2 scans a year because of all the toxicity involved… so how do you keep a close eye on my situation? France and the US for the first 2 yesrs is 4 scans per year… 

      Please someone help.

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    • Replies
        Janner
        Participant

          Not suprising, you should have said you were in Canada to begin with.  But even in the US, there are not a lot of options.  Only IPI 10mg, not even the approved 3mg that stage IV folks get.

          As for scans, they haven't actually shown an increased survival benefit.  And depending on where you are located will detemine your scan frequency.  4x a year is NOT universal even in the US. 

          I'm sorry she wasn't supportive, but it is likely you will encounter the same info at a different docs.  If you are able to go to a different center, it might be possible that they offer different clinical trials.  Not sure how that works in Canada but definitely the case in the US.  Trials are site specific.

          Janner
          Participant

            Not suprising, you should have said you were in Canada to begin with.  But even in the US, there are not a lot of options.  Only IPI 10mg, not even the approved 3mg that stage IV folks get.

            As for scans, they haven't actually shown an increased survival benefit.  And depending on where you are located will detemine your scan frequency.  4x a year is NOT universal even in the US. 

            I'm sorry she wasn't supportive, but it is likely you will encounter the same info at a different docs.  If you are able to go to a different center, it might be possible that they offer different clinical trials.  Not sure how that works in Canada but definitely the case in the US.  Trials are site specific.

            Janner
            Participant

              Not suprising, you should have said you were in Canada to begin with.  But even in the US, there are not a lot of options.  Only IPI 10mg, not even the approved 3mg that stage IV folks get.

              As for scans, they haven't actually shown an increased survival benefit.  And depending on where you are located will detemine your scan frequency.  4x a year is NOT universal even in the US. 

              I'm sorry she wasn't supportive, but it is likely you will encounter the same info at a different docs.  If you are able to go to a different center, it might be possible that they offer different clinical trials.  Not sure how that works in Canada but definitely the case in the US.  Trials are site specific.

              ed williams
              Participant

                Hi Sole, so what to do now that the cards are on the table? You said in a previous post that you are not interested in Ipi or interferon so watch and wait or do a CLND and look for a clinical trial seem your two options. Standard of care in many places is watch and wait and the frequency of scans can probably be increased if you push them on it!!! The toxicity arguement, is doc talk in Canada for trying to save money on Scans. Your best options at present is probably getting into the Pembro(pd-1 ) trial in the adjuvant setting, with clinical trials comes closer monitoring and scan frequency increases. Best of luck!!!!Ed

                ed williams
                Participant

                  Hi Sole, so what to do now that the cards are on the table? You said in a previous post that you are not interested in Ipi or interferon so watch and wait or do a CLND and look for a clinical trial seem your two options. Standard of care in many places is watch and wait and the frequency of scans can probably be increased if you push them on it!!! The toxicity arguement, is doc talk in Canada for trying to save money on Scans. Your best options at present is probably getting into the Pembro(pd-1 ) trial in the adjuvant setting, with clinical trials comes closer monitoring and scan frequency increases. Best of luck!!!!Ed

                  ed williams
                  Participant

                    Hi Sole, so what to do now that the cards are on the table? You said in a previous post that you are not interested in Ipi or interferon so watch and wait or do a CLND and look for a clinical trial seem your two options. Standard of care in many places is watch and wait and the frequency of scans can probably be increased if you push them on it!!! The toxicity arguement, is doc talk in Canada for trying to save money on Scans. Your best options at present is probably getting into the Pembro(pd-1 ) trial in the adjuvant setting, with clinical trials comes closer monitoring and scan frequency increases. Best of luck!!!!Ed

                    ed williams
                    Participant

                      Hi Sole, so what to do now that the cards are on the table? You said in a previous post that you are not interested in Ipi or interferon so watch and wait or do a CLND and look for a clinical trial seem your two options. Standard of care in many places is watch and wait and the frequency of scans can probably be increased if you push them on it!!! The toxicity arguement, is doc talk in Canada for trying to save money on Scans. Your best options at present is probably getting into the Pembro(pd-1 ) trial in the adjuvant setting, with clinical trials comes closer monitoring and scan frequency increases. Best of luck!!!!Ed

                      ed williams
                      Participant

                        Hi Sole, so what to do now that the cards are on the table? You said in a previous post that you are not interested in Ipi or interferon so watch and wait or do a CLND and look for a clinical trial seem your two options. Standard of care in many places is watch and wait and the frequency of scans can probably be increased if you push them on it!!! The toxicity arguement, is doc talk in Canada for trying to save money on Scans. Your best options at present is probably getting into the Pembro(pd-1 ) trial in the adjuvant setting, with clinical trials comes closer monitoring and scan frequency increases. Best of luck!!!!Ed

                        ed williams
                        Participant

                          Hi Sole, so what to do now that the cards are on the table? You said in a previous post that you are not interested in Ipi or interferon so watch and wait or do a CLND and look for a clinical trial seem your two options. Standard of care in many places is watch and wait and the frequency of scans can probably be increased if you push them on it!!! The toxicity arguement, is doc talk in Canada for trying to save money on Scans. Your best options at present is probably getting into the Pembro(pd-1 ) trial in the adjuvant setting, with clinical trials comes closer monitoring and scan frequency increases. Best of luck!!!!Ed

                          Linny
                          Participant

                            There are many Stage III patients who are doing watch & wait and are doing great. But what you need with that is a better follow up plan than what you were offered.

                            It sounds like you need a second opinion. Some doctors are jerks and it sounds like the one you saw was one. There is a melanoma facility in Quebec listed on this page: http://melanomainternational.org/web-resources/global-resources/#5

                            If you want to travel to the US, there are facilities in New York State and in Massachusetts. Dana Farber in Boston is one of the leading melanoma centers in the US. 

                            For my treatment option I chose a clinical trial. I had a 2/3 chance of getting the vaccine and if I got the placebo it would not be any different from a watch & wait. Watch & wait was my second choice. Either way, I was under excellent surveillance. Interferon was my third choice and I didn't want to give up a year of my life dealing with side effects, so no way was I going to do that. 

                            I don't know if that doc bothered to explain this to you, so I will: the longer you go without a recurrence, the less odds there are of having a recurrence. The highest odds of having a recurrence happen within the first two years. After I hit two years, it was as if a huge weight was lifted from my shoulders. When I hit five years, another weight was lifted. ๐Ÿ™‚

                             

                            Linny
                            Participant

                              There are many Stage III patients who are doing watch & wait and are doing great. But what you need with that is a better follow up plan than what you were offered.

                              It sounds like you need a second opinion. Some doctors are jerks and it sounds like the one you saw was one. There is a melanoma facility in Quebec listed on this page: http://melanomainternational.org/web-resources/global-resources/#5

                              If you want to travel to the US, there are facilities in New York State and in Massachusetts. Dana Farber in Boston is one of the leading melanoma centers in the US. 

                              For my treatment option I chose a clinical trial. I had a 2/3 chance of getting the vaccine and if I got the placebo it would not be any different from a watch & wait. Watch & wait was my second choice. Either way, I was under excellent surveillance. Interferon was my third choice and I didn't want to give up a year of my life dealing with side effects, so no way was I going to do that. 

                              I don't know if that doc bothered to explain this to you, so I will: the longer you go without a recurrence, the less odds there are of having a recurrence. The highest odds of having a recurrence happen within the first two years. After I hit two years, it was as if a huge weight was lifted from my shoulders. When I hit five years, another weight was lifted. ๐Ÿ™‚

                               

                              Linny
                              Participant

                                There are many Stage III patients who are doing watch & wait and are doing great. But what you need with that is a better follow up plan than what you were offered.

                                It sounds like you need a second opinion. Some doctors are jerks and it sounds like the one you saw was one. There is a melanoma facility in Quebec listed on this page: http://melanomainternational.org/web-resources/global-resources/#5

                                If you want to travel to the US, there are facilities in New York State and in Massachusetts. Dana Farber in Boston is one of the leading melanoma centers in the US. 

                                For my treatment option I chose a clinical trial. I had a 2/3 chance of getting the vaccine and if I got the placebo it would not be any different from a watch & wait. Watch & wait was my second choice. Either way, I was under excellent surveillance. Interferon was my third choice and I didn't want to give up a year of my life dealing with side effects, so no way was I going to do that. 

                                I don't know if that doc bothered to explain this to you, so I will: the longer you go without a recurrence, the less odds there are of having a recurrence. The highest odds of having a recurrence happen within the first two years. After I hit two years, it was as if a huge weight was lifted from my shoulders. When I hit five years, another weight was lifted. ๐Ÿ™‚

                                 

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