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kcmtnbiker

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      kcmtnbiker
      Participant
        When I was on Opdivo, the first time, I started to see results about 3 months (6 to 8 treatments). The most noticeable was in the corner of my left eye socket and at it’s peak I could see it. I had several additional spots that were very noticeable that I watched fade away. after about 9 to 10 months all of the visible spots had disappeared. It was a slow process but they disappeared one by one, it was very satisfying. I stayed on treatment for about 36 treatments. Unfortunately, the melanoma is back and all internal. From what I am reading, and was not well understood at the time, is if it has metastasized once you are NED the patient should stay on Opdio for an extended period of time (up to a year) or as long as your body will tolerate the treatment.
        kcmtnbiker
        Participant

          Good Luck! My first surgary was on a FRIDAY the 13th. 🙂 While this likely won't work for you, I told the guys in the locker room the scar on my back was from a knife fight. In other words, keep up the fight and a positive outlook.

          kcmtnbiker
          Participant

            I fully understand your fears. Melanoma is pretty scary. I have been under treatment for over 6 years and have had many ups and downs. Currently it is stage 4, but under control and shrinking with Opdivo. With the new classes of drugs that are available there are several paths that you will have available for treatment. The strides that have been taken since I started down this road are remarkable to say the least. Being the ever optomistic type, I have just adopted a goldnedoodle puppy. So, I need to hang around for at least another 15 years, for her. 🙂 Then today I pickup my new electric assist mountain bike. I love to ride the trails. The reason I tell you all of this is that you don't have to stop living. My opinion is that this is an opportunity to live life more fully. Good luck on your journey and I hope the doctor is wrong. Mine was wrong when he said "it's nothing" and it was melanoma so I didn't get treatment for several years.. At least your doctor is being agressive. It is very important to get started early.

            kcmtnbiker
            Participant

              My understanding of In Situ is that the Melanoma is confined to the epidermis. So my assumption would be that the sample provided to the Pathologist did not have any signs of melanoma deeper than the epidermis. This referance does not necessarly determine the width – how far it extends to the sides. That is what finding clear margins would indicate, rather it is in referance to the depth. A Melanoma that does not extend deeper the the epidermis is a good sign.  Good Luck

              kcmtnbiker
              Participant

                I too had a mole that was diagnosed as dysplastic Nevi for several years. My GP said it was nothing for several years. I changed GPs for other reasons and my new GP sent me to a Dermatologist. The Dermatologist said is was a dysplastic Nevi and froze it off. When in came back looking even more angry, I finally insisted on a biopsy and it came back positive as melanoma. I am now a 6 year survivor and still under treatment. (stage 4 and holding) The best advice at this point is for you to get into your doctor or preferably a Dermatologist.  Early treatment is key. So, don't put off getting it looked at and (in my opinion) having it biopsied.

                kcmtnbiker
                Participant

                  The best advice at this point is for you to get into your doctor or preferably a Dermotologist. A long term mole that changes quickly should be concerning. It is very difficult to be certain if a spot is melanoma or not just by looking at it. A shave biopsy is a good place to start. (mine was not diagnosed as melanoma until I requested a biopsy. It did not "look" like melanoma.) Early treatment is key. So, don't put off getting it looked at and (in my opinion) having it biopsied. Good Luck!

                  kcmtnbiker
                  Participant

                    From my personal experance, I did have some initial tumor growth, some new and some just got bigger, when I started on Opdivo. My Oncologist said that this was not abnormal. As I understood it, when your immuin system starts fighting the cancer it will surround the cancer cells and cause some apparant growth. This is a good thing as the additional cells that are causing the growth are attacking the cancer. I was several months into the Opdio treatments before I started noticing the various melanoma spots start to melt away. I was NED for a year as a result.

                    kcmtnbiker
                    Participant

                      I did 37 biweekly treatments on Opdivo and worked the entire time. I had some fatigue, but it was managable. Everyone has different impacts from the Opdivo, I found that having to get up and go to work made the treament impacts much more manageable. It would have been easy to veg out in front of the TV. My coping included getting a good nights rest – about 6 to 7 hours, taking vitaimin B, D and a probiotic. 

                      Good luck on your treatment.

                      kcmtnbiker
                      Participant

                        Thanks!!

                        kcmtnbiker
                        Participant

                          I worked outside all last summer and used "No-Add Sport 50" (I get it from Amazon). I could apply it in the morning and at lunch. It stays on, doesn't get in my eyes doesn't stain my clothes and lasts longer than the label says. That coupled with a broad brimmed hat, some very light weight shirts from Duluth Trading Co. (Armachillo I think) kept me very pale throughout the summer.

                          kcmtnbiker
                          Participant

                            Good luck and keep your sense of humor. It will serve you well.

                            kcmtnbiker
                            Participant

                              I could not agree more. All of mine have been atypical in appearance and "nothing to worry about". For piece of mind – bet it biopsied.

                              kcmtnbiker
                              Participant

                                I started on Opdivo the first time only a few months after FDA approval. I did a round of Yarvoy first, this was before concurrent Yarvoy & Opdivo treatment had been approved. Anyway after I had been on treatment for about a year, there was no evidance of disease. We continued treatment for a few more cycles. I was still working full time and told my Oncologist I was going to go ahead and retire as the fatigue was getting to me. He said he wanted to take me off the Opdivo anyway. At this time there was not much evidance on how long you should be on Opdivo once you were NED. Since I was not demonstrating any side effects other than fatigue and had such a strong positive resolution, he felt that if I came off and the melanoma came back, I could go back on the Opdivo. I had some organ issues when on the prior treatment program using Interferon and we were both concerned about the long term implications of that treatment plan. Well, about 6 to 8 months later it was back – in full force – involving several internal organs. So, I went back on the Opdivo and have had similar excellent results. However, this time I think we will stay the course until my body won't tolerate the Opdivo. In the interm, I did go ahead and retire, so I am able to work around the fatigue and not let it get in my way.

                                kcmtnbiker
                                Participant

                                  Thanks very interesting on the call to Bristol-Myers Squibb, it kind of makes sense. Having come off Opdivo for almost a year and had a very fast and nasty reoocurance, I am not in any hurry to stop treatment.

                                  As far as where I rode, it was at Table Rock State Park. There are some awsome trails. I have done some riding in Jacksonville and loved the flow of the trail – nicely banked and fast. The trail I rode was next to the ocean. It's been a few years and I don't remeber the name.

                                  kcmtnbiker
                                  Participant

                                    I agree with the statement that "YOU have to do what makes YOU comfortable,…. The biopsy that diagnosed my first melanoma was only done because I insisted on it. The Dermotologist insisted it was nothing.

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