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Repeat SNB & Local Recurrence
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Repeat SNB & Local Recurrence

› Forums › General Melanoma Community › Repeat SNB & Local Recurrence

  • Post
    • January 21, 2014 at 7:30 pm
    LibbyinVA
    Participant

      Has anyone ever had a repeat SNB? I am asking this for a friend who first had a stage 1b melanoma removed from the ankle area. A WLE was performed and path report showed clear margins. The SNB was clean. The patient is now stage III due to a local recurrence a few months later that was very close to the original lesion and a repeat SNB was performed. Three nodes were removed. Two were clean and one node possibly showed some melanoma. The pathologists will not put a dx of melanoma in the path report. There is only one slide that shows approximately 30 atypical cells. They needed an additional slide to do more testing but the next slide shows no atypical cells. Based on the one slide, which no one will state definitively shows melanoma cells, the oncologist is recommending an inguinal node dissection and a clinical trial with three arms: 1-INF, 2-High dose IPI and 3-Lower dose IPI. He also told the patient that none of the nodes removed will show melanoma cells.

      The patient is very uncertain about how to proceed given the fact that no one is sure melanoma is present and is wondering why a total node dissection is indicated due to the oncologist's statement that it will not show any melanoma. The patient knows the LND is big surgery and all three arms of the trial have significant side effects.

      Would greatly appreciate hearing from anyone with a similar experience, especially what kind of treatment was recommended. Also, did anyone participate in a vaccine trial?

      Thanks!

      LibbyinVA (Stage IIIb, NED since 2006)

    Viewing 14 reply threads
    • Replies
        • January 21, 2014 at 7:45 pm
        LibbyinVA
        Participant

          Forgot to add the patient has had CT and PET scans…both were clean.

          • January 21, 2014 at 7:45 pm
          LibbyinVA
          Participant

            Forgot to add the patient has had CT and PET scans…both were clean.

            • January 21, 2014 at 7:45 pm
            LibbyinVA
            Participant

              Forgot to add the patient has had CT and PET scans…both were clean.

                • January 21, 2014 at 8:22 pm
                momof4boys
                Participant
                  Yes, this is a big surgery and not to be taken lightly as it can cause lymphadema which is a beast all its own. Secondly, there are only two arms left in this trial. They did away with the high dose ipi due to deaths. I also had a clean pet while having a positive node due to it being microscopic.
                  • January 21, 2014 at 8:22 pm
                  momof4boys
                  Participant
                    Yes, this is a big surgery and not to be taken lightly as it can cause lymphadema which is a beast all its own. Secondly, there are only two arms left in this trial. They did away with the high dose ipi due to deaths. I also had a clean pet while having a positive node due to it being microscopic.
                    • January 21, 2014 at 8:22 pm
                    momof4boys
                    Participant
                      Yes, this is a big surgery and not to be taken lightly as it can cause lymphadema which is a beast all its own. Secondly, there are only two arms left in this trial. They did away with the high dose ipi due to deaths. I also had a clean pet while having a positive node due to it being microscopic.
                    • January 22, 2014 at 2:52 am
                    Momrn5
                    Participant

                      I am 3a. I went through an inguinal node dissection for a microscopic amount of melanoma cells in the sentinel node.  All inguinal nodes were negative.  I was in the hospital overnight. I went home with 2 Jackson Pratt drains in the left groin area.  They were in for 2 weeks.  There is a high rate of infection, but I didn't get infected thankfully.  I had a month off of work.  I have a trace amount of lymph edema in my left leg.  I wrapped it for a straight 3 weeks after the surgery and now wear a special stocking when I fly or if it looks like it's swelling a little more than usual.  I am not doing anything else but watch.  I would choose to get the dissection again, especially in your friend's spot with a reoccurrence.  Hope this was helpful.  Good Luck!  

                      • January 22, 2014 at 2:52 am
                      Momrn5
                      Participant

                        I am 3a. I went through an inguinal node dissection for a microscopic amount of melanoma cells in the sentinel node.  All inguinal nodes were negative.  I was in the hospital overnight. I went home with 2 Jackson Pratt drains in the left groin area.  They were in for 2 weeks.  There is a high rate of infection, but I didn't get infected thankfully.  I had a month off of work.  I have a trace amount of lymph edema in my left leg.  I wrapped it for a straight 3 weeks after the surgery and now wear a special stocking when I fly or if it looks like it's swelling a little more than usual.  I am not doing anything else but watch.  I would choose to get the dissection again, especially in your friend's spot with a reoccurrence.  Hope this was helpful.  Good Luck!  

                        • January 22, 2014 at 2:52 am
                        Momrn5
                        Participant

                          I am 3a. I went through an inguinal node dissection for a microscopic amount of melanoma cells in the sentinel node.  All inguinal nodes were negative.  I was in the hospital overnight. I went home with 2 Jackson Pratt drains in the left groin area.  They were in for 2 weeks.  There is a high rate of infection, but I didn't get infected thankfully.  I had a month off of work.  I have a trace amount of lymph edema in my left leg.  I wrapped it for a straight 3 weeks after the surgery and now wear a special stocking when I fly or if it looks like it's swelling a little more than usual.  I am not doing anything else but watch.  I would choose to get the dissection again, especially in your friend's spot with a reoccurrence.  Hope this was helpful.  Good Luck!  

                          • January 22, 2014 at 6:23 am
                          Marianne quinn
                          Participant

                            The ipi trial is still on. My husband is having his second infusion of 10 mg ipi tomorrow . His first went very well and he feels fine.  He got melanoma from hitting his thumb with a hammer! The wound never healed and he developed melanoma under his nail. Very rare. He had a partial amputation. He had 2 positive nodes and then a lymphendectomy . He has some lymph edema but not bad. We are happy he did not get the interferon. 

                              • January 22, 2014 at 10:22 am
                              JC
                              Participant

                                you can get melanoma from trauma (hitting thumb with hammer)?

                                • January 22, 2014 at 10:22 am
                                JC
                                Participant

                                  you can get melanoma from trauma (hitting thumb with hammer)?

                                  • January 22, 2014 at 11:46 pm
                                  Marianne quinn
                                  Participant

                                    Very rare. Can hardly find any info about it. Let it go way too long before getting it seen. Hand surgeon recognized it right away. Not related to sun. Sometimes it occurs under the big toe after trauma. More common in blacks

                                    • January 22, 2014 at 11:46 pm
                                    Marianne quinn
                                    Participant

                                      Very rare. Can hardly find any info about it. Let it go way too long before getting it seen. Hand surgeon recognized it right away. Not related to sun. Sometimes it occurs under the big toe after trauma. More common in blacks

                                      • January 22, 2014 at 11:46 pm
                                      Marianne quinn
                                      Participant

                                        Very rare. Can hardly find any info about it. Let it go way too long before getting it seen. Hand surgeon recognized it right away. Not related to sun. Sometimes it occurs under the big toe after trauma. More common in blacks

                                        • January 22, 2014 at 10:22 am
                                        JC
                                        Participant

                                          you can get melanoma from trauma (hitting thumb with hammer)?

                                        • January 22, 2014 at 6:23 am
                                        Marianne quinn
                                        Participant

                                          The ipi trial is still on. My husband is having his second infusion of 10 mg ipi tomorrow . His first went very well and he feels fine.  He got melanoma from hitting his thumb with a hammer! The wound never healed and he developed melanoma under his nail. Very rare. He had a partial amputation. He had 2 positive nodes and then a lymphendectomy . He has some lymph edema but not bad. We are happy he did not get the interferon. 

                                          • January 22, 2014 at 6:23 am
                                          Marianne quinn
                                          Participant

                                            The ipi trial is still on. My husband is having his second infusion of 10 mg ipi tomorrow . His first went very well and he feels fine.  He got melanoma from hitting his thumb with a hammer! The wound never healed and he developed melanoma under his nail. Very rare. He had a partial amputation. He had 2 positive nodes and then a lymphendectomy . He has some lymph edema but not bad. We are happy he did not get the interferon. 

                                            • January 22, 2014 at 7:56 am
                                            bodrum
                                            Participant

                                              Hi Libby,

                                              I'm having a similar experience.  My first pathalogist found 6 cells in one of my nodes after SNB. We sent it to a new lab and also sent the samples in for BRAF mutation. The new pathalogist is not saying that it's melanoma but she is also saying that she can't say that it's not.  The BRAF was  also negative for the node while my birthmark/melanoma was positive for the BRAF. From what I've read there is no loss of expression for BRAF mutation.

                                              Maybe your friend can have the melanoma tested for BRAF and then the node tested for BRAF also to be sure it's melanoma?

                                               

                                              • January 22, 2014 at 7:56 am
                                              bodrum
                                              Participant

                                                Hi Libby,

                                                I'm having a similar experience.  My first pathalogist found 6 cells in one of my nodes after SNB. We sent it to a new lab and also sent the samples in for BRAF mutation. The new pathalogist is not saying that it's melanoma but she is also saying that she can't say that it's not.  The BRAF was  also negative for the node while my birthmark/melanoma was positive for the BRAF. From what I've read there is no loss of expression for BRAF mutation.

                                                Maybe your friend can have the melanoma tested for BRAF and then the node tested for BRAF also to be sure it's melanoma?

                                                 

                                                • January 22, 2014 at 7:56 am
                                                bodrum
                                                Participant

                                                  Hi Libby,

                                                  I'm having a similar experience.  My first pathalogist found 6 cells in one of my nodes after SNB. We sent it to a new lab and also sent the samples in for BRAF mutation. The new pathalogist is not saying that it's melanoma but she is also saying that she can't say that it's not.  The BRAF was  also negative for the node while my birthmark/melanoma was positive for the BRAF. From what I've read there is no loss of expression for BRAF mutation.

                                                  Maybe your friend can have the melanoma tested for BRAF and then the node tested for BRAF also to be sure it's melanoma?

                                                   

                                                    • January 24, 2014 at 4:29 pm
                                                    LibbyinVA
                                                    Participant

                                                      Thank you so much for your detailed reply. Things have changed so much since I was dx'ed backmin 2005 and I am working hard to get up to speed once again. Could you explain what you mean by no loss of expression for BRAF mutation? I also do not understand how your node was BRAF negative but your birthmark/melanoma was BRAF positive. Again, thanks…Libby

                                                      • January 24, 2014 at 4:29 pm
                                                      LibbyinVA
                                                      Participant

                                                        Thank you so much for your detailed reply. Things have changed so much since I was dx'ed backmin 2005 and I am working hard to get up to speed once again. Could you explain what you mean by no loss of expression for BRAF mutation? I also do not understand how your node was BRAF negative but your birthmark/melanoma was BRAF positive. Again, thanks…Libby

                                                        • January 24, 2014 at 4:29 pm
                                                        LibbyinVA
                                                        Participant

                                                          Thank you so much for your detailed reply. Things have changed so much since I was dx'ed backmin 2005 and I am working hard to get up to speed once again. Could you explain what you mean by no loss of expression for BRAF mutation? I also do not understand how your node was BRAF negative but your birthmark/melanoma was BRAF positive. Again, thanks…Libby

                                                        • January 27, 2014 at 5:12 pm
                                                        JerryfromFauq
                                                        Participant

                                                            Especially when there is almost zero chance of finding any melanoma cells.  Monitoring, yes, but they are there for a good reason.

                                                          • January 27, 2014 at 5:12 pm
                                                          JerryfromFauq
                                                          Participant

                                                              Especially when there is almost zero chance of finding any melanoma cells.  Monitoring, yes, but they are there for a good reason.

                                                            • January 27, 2014 at 5:12 pm
                                                            JerryfromFauq
                                                            Participant

                                                                Especially when there is almost zero chance of finding any melanoma cells.  Monitoring, yes, but they are there for a good reason.

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