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
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