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Nicky

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      Nicky
      Participant
        Yes, 14 years ago, level 4, they usually present deep, zapped it with radiation, no further trouble.
        Nicky
        Participant

          I was diagnosed with a Desmoplastic Melanoma in 2005, 3.55 mm depth, no regression, some lymph infiltrate.   The surgeons said that they treated it like a soft tissue sarcoma and it is not unusual for them to be quite deep when presented. I have had various other primaries, one superfical spreading melanoma in situ spreading to my lymph nodes in my groin for which I received radiation therapy in 2001. Given my history I pushed to get radiation therapy on the DM to avoid local recurrence.  To date, I have had no further issues and I am currently NED.  

          Nicky
          Participant

            Thanks Carol K.  I am checking in too.  I have been a long term poster on this Board and currently 17 years NED after Stage 3b melanoma, some may remember me.  My treatment back then was surgery and radiation therapy for local control.  I am sending my best wishes to everyone battling this disease.   

            Nicky
            Participant

              Hi, sorry to hear of your diagnosis.  I'm a fellow kiwi living in Australia and have battled this disease for 17 years.  I wish you all the best in your fight.  This board certainly got me through some tough times but armed me with so much knowledge.  I hope that you get the answers you seek.

              Nicky
              Participant

                Hi Janner, that is fantastic news.  I am so happy for you that you have reached this milestone. You have made such an incredible   contribution over the years and giving to others support on this board it is good that you have posted your own positive story.  I may not visit the board much these days but it's lovely to see a familiar name every time I do. Keep up the good work but don't not forget yourself. Wishing you many years of NED. Nicky -17 years NED

                Nicky
                Participant

                  Hi there, you sound like you are having an incredibly rough time, this disease can be such a roller coaster.  We are here to support you in any way we can.  Fight it, and tell yourself that melanoma is not going to beat you. Be strong. I wish you all the best in this journey. 

                  Nicky
                  Participant

                    Hi there, sorry for your diagnosis.  You are right to be your own advocate and question and fight for your survival. It's a lesson I learnt 17 years ago when I was first diagnosed with Stage III melanoma.  It has kept me in good stead and has helped me survive two more melanomas.  I wish you all the best in your journey.

                    Nicky
                    Participant

                      Thanks everyone for your kind words.

                      I know sometimes it helps to hear some good news.

                      Great to see you are still on the board Janner.

                       

                      Nicky
                      Participant

                        Thanks everyone for your kind words.

                        I know sometimes it helps to hear some good news.

                        Great to see you are still on the board Janner.

                         

                        Nicky
                        Participant

                          Thanks everyone for your kind words.

                          I know sometimes it helps to hear some good news.

                          Great to see you are still on the board Janner.

                           

                          Nicky
                          Participant

                            Hi Kelly, I'm sorry to hear that you are feeling so down.  It is good that you have found this forum as it can offer such wonderful support and friendship. After battling this disease for 15 years, currently Stage IIIb, I remember contacting my local cancer council which offered free counselling and I found that really helpful when I was first diagnosed as friends and family don't always understand what you are going through. It gave me the tools to remain positive and determined to make changes like reducing stress to give my immune system the best support it could get. If you have this in your area or through a hospital I would recommend it.   Take care of yourself and I wish you all the best.

                            Nicky
                            Participant

                              Hi, I don’t know whether I am BRAF positive or not. Diagnosed Stage 3b in 2001. Currently NED. There are many long term survivors out there, they just don’t necessarily post. I have had 3 more primary melanomas but none have metastasized thanks to early detection every 3 months. I wish you all the best.

                              Nicky
                              Participant

                                I was also one of the rare unlucky ones. In situ on my right leg, 9 months later it was in my right groin lymph nodes. Thank goodness I’ve stayed alive long enough to see these new treatments, back then there were very few options. Skin checks are so important, I can’t stress that enough. 18 years battling this x%^#{ disease.

                                Nicky
                                Participant

                                  Thanks everyone. Very grateful that it’s still a thin melanoma. I’ve already had a full dissection of the lymph nodes in my groin 18 years ago and I really want to preserve all the rest of them. I am readying my self for three surgeries this afternoon. A wider excision for the melanoma on my back, another suspicious mole and another squamous carcinoma on my face. I’m going to have a margarita when I get to Los Angeles and raise it to all my old melanoma friends past and present on this amazing American page. I know there is a lot of pain on this board and we can all just allow ourselves to acknowledge it. At least we have each other through the good times and bad no matter where we are in the world. I wish you all so much healing on your journey.

                                  Nicky
                                  Participant

                                    Hi Janice, thinking of you at this time.  I was also diagnosed 17 years ago and have been on this board a long time. Stage III melanoma in one lymph node in groin with extracapsulary spread.  Whatever the diagnosis is, we are all hereto support you.  Time will never change that.

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