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Stopping BRAF / MEK meds after complete response
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Stopping BRAF / MEK meds after complete response

› Forums › General Melanoma Community › Stopping BRAF / MEK meds after complete response

  • Post
    • February 20, 2018 at 5:21 pm
    MC1R
    Participant

      My journey into Stage IV was 2 subcentimeter brain mets that were treated by gamma knife and Taf / Mek.  They completely resolved at 6 months and I continued to take the meds for a total of 2 years with no reoccurances.  During that time I had on and off side effects but nothing that made me stop taking them for more than a few days at a time. 

      My melanoma oncologist says that I can stop taking the meds.  I have searched but have not been able to find any studies that would make me feel safe about this.  I know I am in a small subgroup who was able to stay on the drugs for that long and might be in new terrotory. But I thought I would check with the "front line" to come up with any emperical data.

      Thanks for any input!

       

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        • February 21, 2018 at 1:09 am
        sea8star
        Participant

          Congrats first off.  You're in a great place.  If I was you the only thing more I would be looking for is a process called circulating tumor DNA monitoring which might be available to you if you're an Australian or in a clinical trail in the U.S.  Check this paper out.  https://www.sciencedirect.com/science/article/pii/S0304383517304123.   Basically, clean scans are great, but a doctor with this new technique can feel very confident taking responders off of their treatments with a blood draw and an analysis of the loose DNA just rattling around in your bloodstream. 

          • February 21, 2018 at 3:22 pm
          Hukill
          Participant

            I have been NED since August 2017. Dr. keeping me on nivo until August 2018. He told me that studies are showing that there is no real benefit staying on the treatment after 1 year.

            • February 21, 2018 at 3:40 pm
            ed williams
            Participant

              Hi Anon # 1 the Anon that has posted, there are many of us getting check point inhibitors that are facing the same decisions, and without having mature data does make for a tough decision. I am out 4 years on Nivo and keep looking for something to sway me one way or the other. I don't tend to follow the targeted therapy research as much since I don't have the Braf mutation, but the fact that you are out 2 years is a great indicator of long term succes. Dr. Weber did present some long term survival data during one of his video presentations with survival curves for targeted therapy that show a plateau similiar to the one for Ipi. All of this is super positive stuff, now as to Anon # 2 article, which is very interesting and could be the future, all you have to do is read the summary that the author gives to show that it is not ready for prime time yet without clinical trial data to support the hypothesis. Here is a link to Dr. Weber if you are interested, survival curve data starts at around 15min and goes to about 21 min mark. Best Wishes!!!! Ed   https://www.youtube.com/watch?v=ZBcRHFGTyGs 

                • February 22, 2018 at 4:43 am
                MC1R
                Participant

                  Thanks Anon#2 and Ed for the replies.  I think the circulating DNA concept is awesome and I really hope that science gets us there one day.  

                  I watched Dr Weber and love the fact that they stratified the outcomes by disease burden and LDH.  I can’t figure out for sure if those patients still kept taking the drugs for the whole time?  I’m sure there had to be some complete responders in there. 

                  Anon #1

                   

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