Need advice please

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  • Post
    • January 20, 2012 at 12:58 am
    NYKaren
    Participant

      hi,

      1) I just discovered what I believe is a new satellite, in my ear canal!   Has anyone else experienced this?

       While we wait for some Anti PD-1 trial that I fit the criteria for, Dr. Halpern is freezing all the mel on my face & I'm applying Aldera at night.  They are very concerned about halting the progression of satellites, but held off on the planned Temodar because the Merk trial only allows 2 prior systemic treatments…Now I don't know if this new development will change that. 

      hi,

      1) I just discovered what I believe is a new satellite, in my ear canal!   Has anyone else experienced this?

       While we wait for some Anti PD-1 trial that I fit the criteria for, Dr. Halpern is freezing all the mel on my face & I'm applying Aldera at night.  They are very concerned about halting the progression of satellites, but held off on the planned Temodar because the Merk trial only allows 2 prior systemic treatments…Now I don't know if this new development will change that. 

      Called Dr. Wolchok about ear today, he said it's a matter for Dr. Halpern.  Dr. H. is out of town–I have app't with him for the 30th.  

      My next app't w/Wolchok is Feb. 9.

      2)  Dr. H made app't  for me w/one of the surgical derm. docs (right after I see him on the 30th.) to discuss injecting IL-2 into the primary and all the satellites.  I don't know anything about this treatment–the side effects of high dose IL-2 were awful and I wound up not responding.   Anyone know about this, and what the side-effects are?  Can't find anything on internet about it.

      Last week I was cautiously optimistic because Wolchok said that if Merck would allow calipers to show measurable disease, i might get into that trial, and also that GSK is supposed to start an anti pd-1 trial without the current ipi arm.  Enough people have done ipi unsuccessfully…i think it's time–it's just more money in their pocket if/when their anti-pd-1 drug gets FDA approval.

      Any advice/suggestions welcome.

      thanks,

      karen

    Viewing 2 reply threads
    • Replies
        • January 20, 2012 at 2:29 pm
        DonW
        Participant

          Hi, Karen. Satellites are rare and so treatments for them are also. I have heard of injecting IL-2 (and also BCG) directly into sub-qs and I suppose this is also possible for satellites. I don't think there are any side effects, certainly not any like high dose IL-2.

          Good luck getting into your trial. You seem to be in good hands at Sloan and I have heard nothing but good things about Dr. Wolchuck.

          • January 20, 2012 at 2:29 pm
          DonW
          Participant

            Hi, Karen. Satellites are rare and so treatments for them are also. I have heard of injecting IL-2 (and also BCG) directly into sub-qs and I suppose this is also possible for satellites. I don't think there are any side effects, certainly not any like high dose IL-2.

            Good luck getting into your trial. You seem to be in good hands at Sloan and I have heard nothing but good things about Dr. Wolchuck.

              • January 20, 2012 at 9:25 pm
              NYKaren
              Participant

                Thanks, Don

                Yes, he is great, but I wish he could magically make a clinical trial appear.  

                have a great weekend,

                karen

                • January 20, 2012 at 9:25 pm
                NYKaren
                Participant

                  Thanks, Don

                  Yes, he is great, but I wish he could magically make a clinical trial appear.  

                  have a great weekend,

                  karen

                  • January 20, 2012 at 9:25 pm
                  NYKaren
                  Participant

                    Thanks, Don

                    Yes, he is great, but I wish he could magically make a clinical trial appear.  

                    have a great weekend,

                    karen

                  • January 20, 2012 at 2:29 pm
                  DonW
                  Participant

                    Hi, Karen. Satellites are rare and so treatments for them are also. I have heard of injecting IL-2 (and also BCG) directly into sub-qs and I suppose this is also possible for satellites. I don't think there are any side effects, certainly not any like high dose IL-2.

                    Good luck getting into your trial. You seem to be in good hands at Sloan and I have heard nothing but good things about Dr. Wolchuck.

                Viewing 2 reply threads
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