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Update! I’m Braf +ve and -ve. Yep You read it right BOTH
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Update! I’m Braf +ve and -ve. Yep You read it right BOTH

› Forums › General Melanoma Community › Update! I’m Braf +ve and -ve. Yep You read it right BOTH

  • Post
    • January 28, 2019 at 7:44 pm
    Tilly1402
    Participant

      I’ve known for a week or so that my primary melanoma was BRAF+ve and was told the 1 sentinel node deposit was too small to test. However today I got told the node was BRAF-ve. So no dab/tram for me and instead have been suggested Pembro(Keytruda) for a year (adjuvant therapy). Is Pembro the best option? The side effects look scary. Any advice/ comments always gratefully received. Thank you

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        • January 28, 2019 at 8:02 pm
        Bubbles
        Participant

          I think I've shared this with you before….but this primer…

          https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

          …breaks down all the treatments.  Pembrolizumab and Nivolizumab are both anti-PD-1 products with basically the same response rates and side effect profiles.  And while targeted therapy is being use for adjuvant treatment, immunotherapy has actually been used longer.

          Here are tons of report on adjuvant therapy in all forms: 

           https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adjuvant  

          Many here have taken both of these drug categories.  I took nivo alone for 2 1/2 years in a trial with two arms…both Stage IV….one with active disease and one for those who had been rendered NED via surgery and or radiation (as I had for brain and lung mets).  With no further treatment since June of 2013, I remain NED for melanoma.

          Hope this helps.  I think pembro vs nivo is basically 6 of 1, half dozen of the other.  I wish you my best.  Celeste

            • January 28, 2019 at 8:41 pm
            Tilly1402
            Participant

              Thank you Celeste. Apologies for asking twice – I feel I’m going round in circles at the moment, being hit by curve balls. But hopefully once treatment underway the chaos and fear of the unknown will subside. Thank you for your patience x

              • January 28, 2019 at 8:51 pm
              Bubbles
              Participant

                No worries at all.  I just sometimes forget who I've given what to…so hated to repeat it without acknowledging it if I had already posted it for you.  Ask anything as much as you need.  Once you have a firm plan I think you will settle down into a strange, but liveable, melanoma groove!  Hang in there!  c

              • January 28, 2019 at 11:39 pm
              ed williams
              Participant

                Hi Tilly, there is a good series of videos on Onclive from June 2018 at ASCO, talking about Adjuvant treatment options and what is the best way to go. https://www.onclive.com/peer-exchange/advanced-melanoma-paradigms/adjuvant-therapy-options-in-melanoma

                  • January 29, 2019 at 2:52 am
                  Tilly1402
                  Participant

                    Thank you Ed. Think I’m going to go for the adjuvant therapy of Pembro just needed to weigh it up. 🙂

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