SLNB

  • Post
    gregor913
    Participant

      Hi,

      I just got back my results from the SLNB. My surgeon told me the node came back positive for traces of microscopic cancer cells. He does not know if I should have anymore nodes removed because the disease is only microscopic but did state that I would need further treatment. They only found one sentinol node and he ended up removing another 2 nodes because they were really close to each other. Im only 34 years old and I dont think Im comfortable with that approach and I really would like the rest of the lymph nodes taken from that region under my armpit just in case any other cells are in other lymph nodes. Since my tumor was ulcerated im a stage 3b right now.

      Any thoughts would be appreciated since I feel like a boulder was dropped on me.

      Thanks Greg

    Viewing 11 reply threads
    • Replies
        mjanssentx
        Participant

          Greg – you have come to right place.  There many new treatments out there for 3B patients…some that have just been  approved during the past few weeks/months….and there are some clinical trials that would be worth considering.

          I think the most common and important advise from this board would be go find yourself a true Melanoma specialist.  A surgeon or an oncologist is not the right place to get Melanoma advise from…especially for Stage 3 and 4 patients.  You want somebody that treats Melanoma all day long every day of the week.

          You have probably seen the survival rates by stage.  Those rates are quickly becoming outdated for those individual that proactively seek treatment.  (they are still very scary for those that do nothing)

          You can read for hours on this board and you will find various scenarios for treatment…but they will all end the same…go find that specialist even if you have to travel.

          Michel

          mjanssentx
          Participant

            Greg – you have come to right place.  There many new treatments out there for 3B patients…some that have just been  approved during the past few weeks/months….and there are some clinical trials that would be worth considering.

            I think the most common and important advise from this board would be go find yourself a true Melanoma specialist.  A surgeon or an oncologist is not the right place to get Melanoma advise from…especially for Stage 3 and 4 patients.  You want somebody that treats Melanoma all day long every day of the week.

            You have probably seen the survival rates by stage.  Those rates are quickly becoming outdated for those individual that proactively seek treatment.  (they are still very scary for those that do nothing)

            You can read for hours on this board and you will find various scenarios for treatment…but they will all end the same…go find that specialist even if you have to travel.

            Michel

            mjanssentx
            Participant

              Greg – you have come to right place.  There many new treatments out there for 3B patients…some that have just been  approved during the past few weeks/months….and there are some clinical trials that would be worth considering.

              I think the most common and important advise from this board would be go find yourself a true Melanoma specialist.  A surgeon or an oncologist is not the right place to get Melanoma advise from…especially for Stage 3 and 4 patients.  You want somebody that treats Melanoma all day long every day of the week.

              You have probably seen the survival rates by stage.  Those rates are quickly becoming outdated for those individual that proactively seek treatment.  (they are still very scary for those that do nothing)

              You can read for hours on this board and you will find various scenarios for treatment…but they will all end the same…go find that specialist even if you have to travel.

              Michel

              ed williams
              Participant

                Hi Greg, I would like to add to the advice already given. One thing that has come up this year that is important at ASCO was a study done in Europe where they found no overall survival benefit from removing all the lymph nodes. They did however find better regional control of the cancer. The recommendations from the study was to watch via ultra sound and oncologist visits. These finding go against the standard in the U.S. where they tend to follow a CLND. If you go to youtube and type in (ASCO 2015 Melanoma lymph node study) you should be able to listen to the presentation yourself. I have also heard from a couple of Melanoma oncology videos that we might want to keep our Lymph nodes since they are so important in the immune response and T–cell activation when using Immunotherapy drugs. A melanoma specialist would be able to give you the best advice and options at this point. Wishing you the best !!! Ed

                ed williams
                Participant

                  Hi Greg, I would like to add to the advice already given. One thing that has come up this year that is important at ASCO was a study done in Europe where they found no overall survival benefit from removing all the lymph nodes. They did however find better regional control of the cancer. The recommendations from the study was to watch via ultra sound and oncologist visits. These finding go against the standard in the U.S. where they tend to follow a CLND. If you go to youtube and type in (ASCO 2015 Melanoma lymph node study) you should be able to listen to the presentation yourself. I have also heard from a couple of Melanoma oncology videos that we might want to keep our Lymph nodes since they are so important in the immune response and T–cell activation when using Immunotherapy drugs. A melanoma specialist would be able to give you the best advice and options at this point. Wishing you the best !!! Ed

                  ed williams
                  Participant

                    Hi Greg, I would like to add to the advice already given. One thing that has come up this year that is important at ASCO was a study done in Europe where they found no overall survival benefit from removing all the lymph nodes. They did however find better regional control of the cancer. The recommendations from the study was to watch via ultra sound and oncologist visits. These finding go against the standard in the U.S. where they tend to follow a CLND. If you go to youtube and type in (ASCO 2015 Melanoma lymph node study) you should be able to listen to the presentation yourself. I have also heard from a couple of Melanoma oncology videos that we might want to keep our Lymph nodes since they are so important in the immune response and T–cell activation when using Immunotherapy drugs. A melanoma specialist would be able to give you the best advice and options at this point. Wishing you the best !!! Ed

                    momof4boys
                    Participant
                      I’m two years out from getting a clnd in my groin. I’m 3b as well. I got into the ipi/Interferon trial and got ipi 3mg. I did it for over a year. Now there might be different trials but there is hope!
                      momof4boys
                      Participant
                        I’m two years out from getting a clnd in my groin. I’m 3b as well. I got into the ipi/Interferon trial and got ipi 3mg. I did it for over a year. Now there might be different trials but there is hope!
                        momof4boys
                        Participant
                          I’m two years out from getting a clnd in my groin. I’m 3b as well. I got into the ipi/Interferon trial and got ipi 3mg. I did it for over a year. Now there might be different trials but there is hope!
                            gregor913
                            Participant

                              Spoke briefly to my family doctor. He spoke to the oncologist who stated that he wants to do a pet scan and start some chemotherapy. I was just wondering what types of chemotherapy is out there for stage 3b patients.

                              gregor913
                              Participant

                                Spoke briefly to my family doctor. He spoke to the oncologist who stated that he wants to do a pet scan and start some chemotherapy. I was just wondering what types of chemotherapy is out there for stage 3b patients.

                                gregor913
                                Participant

                                  Spoke briefly to my family doctor. He spoke to the oncologist who stated that he wants to do a pet scan and start some chemotherapy. I was just wondering what types of chemotherapy is out there for stage 3b patients.

                                  momof4boys
                                  Participant
                                    Definitely see a melanoma specialist, it is very important. Immunotherapy is the way to go, someone suggesting chemo is not too knowledgeable in this area. Melanoma can be tricky and you want to stay on top of things, with hopefully a newer drug. Being scared and anxious right now is how we all felt too. These new drugs are doing great things in people. I was scared to death at first because I was scared about ipi side effects and didn’t want to do Interferon either. I came to this site and was so incouraged, it totally changed my outlook. Stage 4 people becoming Ned, that’s definitely encouraging because we aren’t even there yet, only 3b
                                    momof4boys
                                    Participant
                                      Definitely see a melanoma specialist, it is very important. Immunotherapy is the way to go, someone suggesting chemo is not too knowledgeable in this area. Melanoma can be tricky and you want to stay on top of things, with hopefully a newer drug. Being scared and anxious right now is how we all felt too. These new drugs are doing great things in people. I was scared to death at first because I was scared about ipi side effects and didn’t want to do Interferon either. I came to this site and was so incouraged, it totally changed my outlook. Stage 4 people becoming Ned, that’s definitely encouraging because we aren’t even there yet, only 3b
                                      momof4boys
                                      Participant
                                        Definitely see a melanoma specialist, it is very important. Immunotherapy is the way to go, someone suggesting chemo is not too knowledgeable in this area. Melanoma can be tricky and you want to stay on top of things, with hopefully a newer drug. Being scared and anxious right now is how we all felt too. These new drugs are doing great things in people. I was scared to death at first because I was scared about ipi side effects and didn’t want to do Interferon either. I came to this site and was so incouraged, it totally changed my outlook. Stage 4 people becoming Ned, that’s definitely encouraging because we aren’t even there yet, only 3b
                                        gregor913
                                        Participant

                                          Im looking into a melanoma specialist but i just want to get through the initial pet scans and possibly more surgery to do a clnd. I never heard of chemo treating melanoma and this was coming from my fcp so I have to see what my oncologist says.Has anyone done chemo for melanoma? IF this is recommended i will definitely get a second opinion because i read alot about yervoy and immunotherapies. But from reading many profiles it seems like CLND is the way to go with treatment of some sort.

                                          gregor913
                                          Participant

                                            Im looking into a melanoma specialist but i just want to get through the initial pet scans and possibly more surgery to do a clnd. I never heard of chemo treating melanoma and this was coming from my fcp so I have to see what my oncologist says.Has anyone done chemo for melanoma? IF this is recommended i will definitely get a second opinion because i read alot about yervoy and immunotherapies. But from reading many profiles it seems like CLND is the way to go with treatment of some sort.

                                            gregor913
                                            Participant

                                              Im looking into a melanoma specialist but i just want to get through the initial pet scans and possibly more surgery to do a clnd. I never heard of chemo treating melanoma and this was coming from my fcp so I have to see what my oncologist says.Has anyone done chemo for melanoma? IF this is recommended i will definitely get a second opinion because i read alot about yervoy and immunotherapies. But from reading many profiles it seems like CLND is the way to go with treatment of some sort.

                                              stars
                                              Participant

                                                Perhaps the better thing is to find a melanoma specialist before you subject yourself to more, possibly unnecessary, surgery? I know in Australian stage III patients can access clincial trials of immunotherapy. Nothing to do with chemo, and I'm not sure if CLNDs are still done. There is definitely debate around it – it's no small thing to do. Do you have anything to lose by holding out a few more days until you find a melanoma specialist? It's very worthwhile with such fast-moving science/treatment options.

                                                stars
                                                Participant

                                                  Perhaps the better thing is to find a melanoma specialist before you subject yourself to more, possibly unnecessary, surgery? I know in Australian stage III patients can access clincial trials of immunotherapy. Nothing to do with chemo, and I'm not sure if CLNDs are still done. There is definitely debate around it – it's no small thing to do. Do you have anything to lose by holding out a few more days until you find a melanoma specialist? It's very worthwhile with such fast-moving science/treatment options.

                                                  stars
                                                  Participant

                                                    Perhaps the better thing is to find a melanoma specialist before you subject yourself to more, possibly unnecessary, surgery? I know in Australian stage III patients can access clincial trials of immunotherapy. Nothing to do with chemo, and I'm not sure if CLNDs are still done. There is definitely debate around it – it's no small thing to do. Do you have anything to lose by holding out a few more days until you find a melanoma specialist? It's very worthwhile with such fast-moving science/treatment options.

                                                    mkirkland
                                                    Participant

                                                      Hi! how were your side effects on the ipi? 

                                                      mkirkland
                                                      Participant

                                                        Hi! how were your side effects on the ipi? 

                                                        mkirkland
                                                        Participant

                                                          Hi! how were your side effects on the ipi? 

                                                          momof4boys
                                                          Participant
                                                            Really not bad at all. Treatment days were the worst because I would be so tired. I also started in the winter and so the itchy skin was kind of bad. Other than that, nothing really
                                                            momof4boys
                                                            Participant
                                                              Really not bad at all. Treatment days were the worst because I would be so tired. I also started in the winter and so the itchy skin was kind of bad. Other than that, nothing really
                                                              momof4boys
                                                              Participant
                                                                Really not bad at all. Treatment days were the worst because I would be so tired. I also started in the winter and so the itchy skin was kind of bad. Other than that, nothing really
                                                              mkirkland
                                                              Participant

                                                                Hi Greg –  like most people in this page will tell you, you should definitely seek out a melanoma specialist. There are many treatment options out there right now for stage 3 patients. 

                                                                Good Luck! 

                                                                mkirkland
                                                                Participant

                                                                  Hi Greg –  like most people in this page will tell you, you should definitely seek out a melanoma specialist. There are many treatment options out there right now for stage 3 patients. 

                                                                  Good Luck! 

                                                                  mkirkland
                                                                  Participant

                                                                    Hi Greg –  like most people in this page will tell you, you should definitely seek out a melanoma specialist. There are many treatment options out there right now for stage 3 patients. 

                                                                    Good Luck! 

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