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Comments on therapy for Stage 3 (MUP)

Forums General Melanoma Community Comments on therapy for Stage 3 (MUP)

  • Post
    Brittany1999
    Participant

      Hi,

      Today I received my treatment plan and we are happy with it. I would like to hear comments and input…please.

      Stage 3 melanoma (found in the lymph nodes of my neck) without a known source (skin-based source was either beaten by my immune system or I picked it off because I'm slightly obsessive compulsive disorder (OCD)).

      Therapy: Complete lymph node dissection in the area. Then IPI / Yervoy (10mg) for 2 years (starting every 3 weeks then down shifting to every 3 months).

      Holding back on Keytruda in the unlikely future event of a recurrence then I would be given it.

      DanSanDiego

    Viewing 8 reply threads
    • Replies
        Marksa2570
        Participant

          Hi Dan,

          I am newly diagnosed and new to the board so dont have much to input but I am in San Diego too and wanted to wish you the best.   I will be thinking good thoughts for you and your treatment.

          Mark

          Marksa2570
          Participant

            Hi Dan,

            I am newly diagnosed and new to the board so dont have much to input but I am in San Diego too and wanted to wish you the best.   I will be thinking good thoughts for you and your treatment.

            Mark

            Marksa2570
            Participant

              Hi Dan,

              I am newly diagnosed and new to the board so dont have much to input but I am in San Diego too and wanted to wish you the best.   I will be thinking good thoughts for you and your treatment.

              Mark

              Linny
              Participant

                Yes, your immune system most likely nailed the melanoma while it was on the skin. But a few cells managed to escape and set up shop in a lymph node. The plus side of all that is that our body's immune system recognized the invader, which is a good thing. Your immune system is a good ally to have when you have melanoma.

                In our case, sentinel node biopsies are not done because there was no mole from which to map to a lymph node. So, they remove all the lymph nodes near the affected area. Those too, will be biopsied to determine how many nodes it traveled to. For those whose groin and axillary areas were affected, they are prone to swelling in a leg or in an arm. That swelling is called lymphedema. Not sure if that applies to lymph node removal from the neck.

                Yervoy can give you some nasty side effects, especially at the 10mg dose. Some folks tolerate the drug better than others. I pray you're in the group that tolerates it well. Your best bet would be to solicit input from people on this forum who have done Yervoy at that dosage to see what their experience was. In case your doctor hasn't told you, the dosage for Stage IV melanoma patients is less than half that. It doesn't make sense to me but perhaps someone here can shed light on that.

                At your doctor visits they will be monitoring your neck area very closely for the next few months. This is normal because they are on the watch for anything unusual on your skin. If melanoma is going to rear its head again, that's the most likely area.

                You have a good treatment plan in place!

                Linny
                Participant

                  Yes, your immune system most likely nailed the melanoma while it was on the skin. But a few cells managed to escape and set up shop in a lymph node. The plus side of all that is that our body's immune system recognized the invader, which is a good thing. Your immune system is a good ally to have when you have melanoma.

                  In our case, sentinel node biopsies are not done because there was no mole from which to map to a lymph node. So, they remove all the lymph nodes near the affected area. Those too, will be biopsied to determine how many nodes it traveled to. For those whose groin and axillary areas were affected, they are prone to swelling in a leg or in an arm. That swelling is called lymphedema. Not sure if that applies to lymph node removal from the neck.

                  Yervoy can give you some nasty side effects, especially at the 10mg dose. Some folks tolerate the drug better than others. I pray you're in the group that tolerates it well. Your best bet would be to solicit input from people on this forum who have done Yervoy at that dosage to see what their experience was. In case your doctor hasn't told you, the dosage for Stage IV melanoma patients is less than half that. It doesn't make sense to me but perhaps someone here can shed light on that.

                  At your doctor visits they will be monitoring your neck area very closely for the next few months. This is normal because they are on the watch for anything unusual on your skin. If melanoma is going to rear its head again, that's the most likely area.

                  You have a good treatment plan in place!

                  Linny
                  Participant

                    Yes, your immune system most likely nailed the melanoma while it was on the skin. But a few cells managed to escape and set up shop in a lymph node. The plus side of all that is that our body's immune system recognized the invader, which is a good thing. Your immune system is a good ally to have when you have melanoma.

                    In our case, sentinel node biopsies are not done because there was no mole from which to map to a lymph node. So, they remove all the lymph nodes near the affected area. Those too, will be biopsied to determine how many nodes it traveled to. For those whose groin and axillary areas were affected, they are prone to swelling in a leg or in an arm. That swelling is called lymphedema. Not sure if that applies to lymph node removal from the neck.

                    Yervoy can give you some nasty side effects, especially at the 10mg dose. Some folks tolerate the drug better than others. I pray you're in the group that tolerates it well. Your best bet would be to solicit input from people on this forum who have done Yervoy at that dosage to see what their experience was. In case your doctor hasn't told you, the dosage for Stage IV melanoma patients is less than half that. It doesn't make sense to me but perhaps someone here can shed light on that.

                    At your doctor visits they will be monitoring your neck area very closely for the next few months. This is normal because they are on the watch for anything unusual on your skin. If melanoma is going to rear its head again, that's the most likely area.

                    You have a good treatment plan in place!

                    stevenallenschwartz
                    Participant

                      I believe that the new clinical studies are attempting to determine if Keytruda should be the frontline attack in stage 3 metastatic mel. I think that the recurrence rate for stage 3 is 60% and not that unlikely. I would get a second opinion or see if there is a clinical wherebty you can forgo Yervoy which is more toxic than Keytruda?  

                        oocn
                        Participant

                          Good note here on Pembro being tested as frontline, my onc seems to think it will be the go to frontline down the road.

                          60%, is perhaps, an outdated statistic for certain stage 3 stratifications. Say for example you had micrometastatic acitivity in just one sentinel node located under the armpit or in the groin, coming in at a 3a. Your risk is much lower than say even a 3a where micromets where found in the neck nodes.

                          You are entirely correct though for bulky stage 3b and 3c, where those rates are even higher.

                          Realistically everyone is different- ultimately the great news is that reccurance rates for stage 3 have trended down since ipi and new stats came out. That is a great thing!

                          oocn
                          Participant

                            Good note here on Pembro being tested as frontline, my onc seems to think it will be the go to frontline down the road.

                            60%, is perhaps, an outdated statistic for certain stage 3 stratifications. Say for example you had micrometastatic acitivity in just one sentinel node located under the armpit or in the groin, coming in at a 3a. Your risk is much lower than say even a 3a where micromets where found in the neck nodes.

                            You are entirely correct though for bulky stage 3b and 3c, where those rates are even higher.

                            Realistically everyone is different- ultimately the great news is that reccurance rates for stage 3 have trended down since ipi and new stats came out. That is a great thing!

                            oocn
                            Participant

                              Good note here on Pembro being tested as frontline, my onc seems to think it will be the go to frontline down the road.

                              60%, is perhaps, an outdated statistic for certain stage 3 stratifications. Say for example you had micrometastatic acitivity in just one sentinel node located under the armpit or in the groin, coming in at a 3a. Your risk is much lower than say even a 3a where micromets where found in the neck nodes.

                              You are entirely correct though for bulky stage 3b and 3c, where those rates are even higher.

                              Realistically everyone is different- ultimately the great news is that reccurance rates for stage 3 have trended down since ipi and new stats came out. That is a great thing!

                            stevenallenschwartz
                            Participant

                              I believe that the new clinical studies are attempting to determine if Keytruda should be the frontline attack in stage 3 metastatic mel. I think that the recurrence rate for stage 3 is 60% and not that unlikely. I would get a second opinion or see if there is a clinical wherebty you can forgo Yervoy which is more toxic than Keytruda?  

                              stevenallenschwartz
                              Participant

                                I believe that the new clinical studies are attempting to determine if Keytruda should be the frontline attack in stage 3 metastatic mel. I think that the recurrence rate for stage 3 is 60% and not that unlikely. I would get a second opinion or see if there is a clinical wherebty you can forgo Yervoy which is more toxic than Keytruda?  

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