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no panic yet…

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  • Post
    • December 4, 2010 at 6:16 pm
    Jan in OC
    Participant

      Well, We just got back from seeing my husband's dermatologist at UCLA (Dr Roger Lo).  We have noticed in the last month that the spots on the chest have become blacker and the Dr confirmed that they have "become more pronounced".  Could just be that the spots are making more pigment…or…the BRAF has met with resistance.  We have a CT scheduled for 12/17 and visit with Onc on 12/20.  Trying not to worry, but we would like to start researching other options.  Dr said we could maybe do trial with MEK/BRAF combo????  Just looking for input.

      Well, We just got back from seeing my husband's dermatologist at UCLA (Dr Roger Lo).  We have noticed in the last month that the spots on the chest have become blacker and the Dr confirmed that they have "become more pronounced".  Could just be that the spots are making more pigment…or…the BRAF has met with resistance.  We have a CT scheduled for 12/17 and visit with Onc on 12/20.  Trying not to worry, but we would like to start researching other options.  Dr said we could maybe do trial with MEK/BRAF combo????  Just looking for input.  Other then IPI, what other options should we consider?

      Jan (wife to Dirk, stage IV,  liver/lung mets, on BRAF since Feb)

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    • Replies
        • December 4, 2010 at 7:35 pm
        killmel
        Participant

          Jan,

           

          Try to remain calm as everyone says to you, but easier said then done!!! You are only human so just try not to worry.

          Trial using MDX1106 drug is suppose to less toxic than IPI.Perhaps you should ask UCLA if they will be get any trials using MDX1106.

          I noticed you mentione GSK Braf/mek combo trial. Is UCLA going to be getting this trial?? If so, when.

          I live in Vegas, and would be able to travel to UCLA , if UCLA is getting GSK Braf/mek combo trial soon.

          Thanks for any info on GSK BRAF/MEK

          Janice

           

           

            • December 5, 2010 at 4:22 am
            LynnLuc
            Participant

              H Lee Moffitt is doing a vaccine trial using MDX 1106- not too bad side effects 🙂 tired most of the time and have large hot itchy lumps from the vaccine shots in my thighs…MDX 1106 is an IV and other then a little flushing, small rash and some joint pain…it's more than tolerable considering….

              • December 5, 2010 at 4:22 am
              LynnLuc
              Participant

                H Lee Moffitt is doing a vaccine trial using MDX 1106- not too bad side effects 🙂 tired most of the time and have large hot itchy lumps from the vaccine shots in my thighs…MDX 1106 is an IV and other then a little flushing, small rash and some joint pain…it's more than tolerable considering….

              • December 4, 2010 at 7:35 pm
              killmel
              Participant

                Jan,

                 

                Try to remain calm as everyone says to you, but easier said then done!!! You are only human so just try not to worry.

                Trial using MDX1106 drug is suppose to less toxic than IPI.Perhaps you should ask UCLA if they will be get any trials using MDX1106.

                I noticed you mentione GSK Braf/mek combo trial. Is UCLA going to be getting this trial?? If so, when.

                I live in Vegas, and would be able to travel to UCLA , if UCLA is getting GSK Braf/mek combo trial soon.

                Thanks for any info on GSK BRAF/MEK

                Janice

                 

                 

            Viewing 1 reply thread
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