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2.5 years

Forums Cutaneous Melanoma Community 2.5 years

  • Post
    SOLE
    Participant

      I am far from bragging about anything. This disease really makes you learn a lot about humility and fragility. I simply want to testify, maybe give some hope, leave a small mark in this community, on this forum.

      For everyone in the storm of advanced melanoma, my humble prayers go to you and your families and loved ones. 

      After 2.5 years, with a diagnosis of acral amenalotic deep ulcerated nodular melanoma under the right forefoot where the sun never shines, I appear to still be NED. I was originally staged 3b with «rare isolated cells in one lymph node» and later found to be stage 2b, maybe (probably) 2c because the initial tumour was resected at the base, giving a Breslow reading of «at least» 2.85mm. I only received surgery because i do not qualify for clinical trials and I live in Canada where, in 2016, there was no adjuvant possible except interferon which I declined. Thankfully, at the time of this writing, I have recently learned that adjuvant Opdivo is given to stage 3 patient after surgery and since the provinces have not yet agreed to reimburse the costs, BMS is gratiously giving it to patients since it has demonstrated its efficacy in preventing recurrences. Lives will be saved in Canada too.

      I am humbled and somehow grateful despite the tsunami I have experienced so far that has completely devasted my whole life. I still fail to see and understand the logic and nature of this disease. I have learned a great deal about it. Too much for comfort. Nonetheless, I am still here.

      So let my few words be there to hopefully comfort someone someday who is going through a similar thing. As for me, I am cautiously more optimistic, despite all the difficult stories we read about, 5, 10, 15 years out of diagnosis. Let us rely on sound science, gut microbiome, adjuvant immunotherapies and all the love in the world coming from your loved ones.

      Sincerely,

      Marc

    Viewing 6 reply threads
    • Replies
        Socks
        Participant

          Congrats on two and a half years!!! 😀

            SOLE
            Participant

              Thank you Socks. I wish you get the immunetherapies to work for you and you get to NED soon. You are not alone. No, you are not. Sending my thoughts and prayers. xxx

            sister of patient
            Participant

              So eloquently stated Marc, thank you! I have many of the same thoughts but couldn't express them like you have. I hope you never have need for immuno or any other treatment and that NED is yours forever!!! Best wishes always!

              Barb

                SOLE
                Participant

                  Thank you Barb! I'm not going to lie, I would have liked to have the chance to receive adjuvant immunotherapy. But I will take your wish with me and cherish it. NED forever! xxx

                cancersnewnormal
                Participant

                  Happy to hear you're still doing well all free and clear! Also happy to see you popping back in to share upbeat news, and share where you can, now that you've been "in the game" awhile! Your "rookie" status is officially revoked. 😉 

                    SOLE
                    Participant

                      Nikki, the celestial star… I may not be a rookie anymore but I am nowhere near being a real inspiring healthy veteran like you! Xxxx

                    WithinMySkin
                    Participant
                      Congrats on the cancerversary, Marc!! Melanoma does change us in ways we never knew we could change. The learning curve is steep and constantly changing – new therapies, new data, new policies all while we are trying to find our new normal. Wishing you health and happiness along your journey to heal.

                      Lauren

                        SOLE
                        Participant

                          Thank you Lauren! I remember going through your blog 2 years ago when I believe you had melanoma come back but also had immunetherapy working so well (I hope I'm getting this right…) Big hugs. xxx

                        Bubbles
                        Participant

                          So glad to see the wonderful posts you've been putting up for others, Marc!!!  Your ability to help those peeps and give solace as you have will touch ever so many more than those you replied to.  I am thrilled that you remain NED!!  Can't believe it has been 2.5 years.  May it continue for a zillion.  Much love and appreciation, c

                            SOLE
                            Participant

                              RIght back at you Les. Yes, time has been given to me and I need to make it count. As long as I can. xxx

                            ed williams
                            Participant

                              Time flies when you are having fun, right Marc!!! Nice to see things didn't progress and you are coming to terms with the beast!!! Best Wishes from Eastern Ontario!!!Ed 

                                SOLE
                                Participant

                                  Thank you Ed. I'd really like to meet you some day since we are next door neighboors. Take good care and salutations from London this weekend where I am attending the Juno Awards.

                                sing123
                                Participant

                                  Such wonderful news, Marc. Hope it is gone,gone,gone!

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