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Prognosis
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Prognosis

› Forums › Cutaneous Melanoma Community › Prognosis

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    • April 22, 2019 at 1:48 pm
    chrispl1974
    Participant

      Hi,

      I signed up in January after having been diagnosed with Melanoma. As you can all imagine, this came as a big surprise, but the doctors are optimistic. Me being cautious by nature, I sometimes wonder if this is a standard approach by doctors to put your mind at ease, or if I can really believe when they say " Treatments have advanced and we caught it "RELATIVELY" early"…

      Thanks in advance for your advise and input. Here some data on my case:

      Diagnosed in January 2019. I had a small 4-5 mm spot on my thigh for around 1.5 years but neglected it.

      My dermatologist did an excision and results were:

      Nodular Melanoma , Breslow depth 1.9mm , no ulceration, Mitotic rate 1, Clarl Level III

      2 Weeks later they did an SLNB and WLE ,unfortunately both extracted lymph nodes had micrometastasis (the report does not show how large, but supcapsular invasion depth in one of them was 2mm in the other 0.5mm with only isolated cells).

      Did MRT and CT etc. and all clear so I have been staged as IIIa   (T2a N2a).

      Started in February with BRAF /MEK inhibitors (Tafinlar and Mekinist) since I am BRAF 600E positive.

      Minor side effects and all good so far. 

      Doctors tell me and I quote "This treatment will kill any remaining cancer cells".

      I have been reading up and although the latest 4 year RFS numbers of Tafinlar – Mekinist for IIIa are impressive, please let me know what else I can do to improve the odds. I have changed my diet and also try to do some yoga. etc. 

      Thanks for your help and take care

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    • Replies
        • April 22, 2019 at 2:16 pm
        Bubbles
        Participant

          Hi Chris, 

          Sorry you are dealing with this.  It sounds as though you are Stage IIIb, so yes, adjuvant care, whether via targeted therapy like you are on, or immunotherapy, does exactly what your docs have said.  I was Stage IV in 2010, with lung and brain mets – surgically removed and zapped respectively, was then on Opdivo in an adjuvant arm for 2 1/2 years and have remained free of melanoma with no additional treatment since.

          Here is a primer I put together regarding current melanoma treatments generally:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

          Here are zillion of articles and reports on adjuvant treatments, covering both targeted and immunotherapy options:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adjuvant  

          As far as diet and yoga…hmmm.  Well, a healthy diet (high on fiber and veggies – low on fats and fast food) as well as exercise have been long known as crucial components to maintaining a healthy body.  That said, there is no data to show that they prevent on ameliorate melanoma.  THAT said, despite being diagnosed as Stage IIIB in 2003 and progressing to Stage IV in 2010….I have ALWAYS maintained a healthy diet, never smoking and always running before and after.  So…though I don't think those activities affect melanoma directly….they certainly keep us as healthy as we can be.

          For melanoma patients on immunotherapy, researchers have found that the microbiome, the cooties in our guts, can really help facillitate (or not) positive responses.  There is less research out currently about its effects for folks on targeted therapy.  However,  in regard to what we know for immunotherapy – eat more fiber and healthy cultures…like those in yogurt, kimchi, keffir, sauerkraut, etc.  Ironically, probiotics from a pill are NOT beneficial.  Here are some reports if you are interested:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=microbiome&max-results=20&by-date=true  

          Hope that helps.  I wish you my best.  Celeste

            • April 22, 2019 at 2:21 pm
            chrispl1974
            Participant

              Thanks for the help Celeste. Very much appreciated. I will read up on the links you provided. I checked again the table, I got here in Germany from my doctors and IIIa should be correct. Primary tumor is less than 2mm and not ulcerated and only 2 nodes have micrometastasis. That counts here in Germany as IIIa. Is this different in the U.S. ? Thanks Christian

              • April 22, 2019 at 4:08 pm
              Bubbles
              Participant

                No.  That sounds right.  I was just guessing based on the info you provided.  c

                • April 22, 2019 at 4:09 pm
                Bubbles
                Participant

                  Sorry.  Missed the part where you noted you were IIIa, while focusing on the rest.  I think that is consistent with pretty much international standards. c

                  • April 22, 2019 at 5:01 pm
                  ed williams
                  Participant

                    Hi Celeste, came across this video series on "research to practice" link is of Dr. Mario Sznol talking about antibiotics and gut microbiome. https://researchtopractice.com/DOU119/Video/1?playlistIndex=2#t=46m22s

                    • April 22, 2019 at 5:17 pm
                    Bubbles
                    Participant

                      Interesting.  Yes, here's my report on the "antibiotic" article:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/02/antibiotic-use-may-decrease.html  Much like Sznol, I think this microbiome stuff is important…but not the end all, be all of why we respond…or not…to immunotherapy.  But, if eating a bit of yogurt helps…why not????  Thanks for sharing!!!  love you!  c

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