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Raegen
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Raegen

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      • August 19, 2017 at 1:52 am
      Raegen
      Participant

        Wait and watch is a terrible approach. Request to have your blood tested for circulating tumour DNA to help inform your treatment options. The tests take 8-12 weeks to come back right now at U of M. There are only 4-5 biochemical pathways that your melanoma can mutate through and learning which pathway needs to be shut down is critical in melanoma. if they know which pathways are affected, then it is much easier to select a checkpoint inhibitor that is right for you. 

         

        There is also genetic testing available at U of M now which can at least tell you if you have any of the major melanoma genes. It's still a matter of controlling whichever pathway is going haywire, but it's much easier to target the checkpoint inhibitor if you know what is going on. Education is everything. 

         

        I highly recommend enrolling in a clinical trial; it has made a huge difference in my quality of life..

         

        Raegen

        • March 27, 2017 at 12:42 am
        Raegen
        Participant

          Mmmhm…Actually, I had a great response to the Mekinist/Tafinlar combination as well – the two tumors on my jaw next to my ear just melted away.  I couldn't tolerate those drugs for very long, however.  The fever/chill cycle was horrific.  My immune system tends to over-rev on many of these drugs due to, I believe, a sensitivity to dairy.  I feel like I am dragging the immunology profession along behind me.  It is a thought…I might be able to return to that combination as well.  Just not one drop of milk and no butter anywhere in my life…

          • March 27, 2017 at 12:33 am
          Raegen
          Participant

            Thank you so much, Celeste, for your thoughtful reply.  They just told me there wouldn't be any more GSK and turned me loose.  I didn't know there were any alternatives…

            Thank you, thank you, thank you!!!  Raegen

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