- March 14, 2019 at 2:08 am
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.
sister of patientParticipant
- March 14, 2019 at 4:14 pm
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!
- March 14, 2019 at 11:47 pm
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. ;)
WithinMySkinParticipantCongrats 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.
- March 15, 2019 at 12:07 pm
- March 15, 2019 at 12:14 pm
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
- March 15, 2019 at 3:02 pm
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
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