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Cautiously Optimistic
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Cautiously Optimistic

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  • Post
    • January 13, 2012 at 5:46 pm
    NYKaren
    Participant

      Hello everyone,

      I saw Dr. Wolchok yesterday.  Now it seems there is more hope for me to get into an Anti PD-1 trial, so we're putting chemo on hold.

      BMS trial of MDX 1106 is supposed to be allowing the removal of ipi for those previously on ipi –was supposed to happen before end of 2011, so waiting for that.   

      The Merk trial only allows for 2 previous systemic treatments, and chemo would be #3 for me, so…  

      Hello everyone,

      I saw Dr. Wolchok yesterday.  Now it seems there is more hope for me to get into an Anti PD-1 trial, so we're putting chemo on hold.

      BMS trial of MDX 1106 is supposed to be allowing the removal of ipi for those previously on ipi –was supposed to happen before end of 2011, so waiting for that.   

      The Merk trial only allows for 2 previous systemic treatments, and chemo would be #3 for me, so…  

      In the  meantime, Dr. Halpern will try to manage the satellites w/laser so, here's hoping and praying.

      Wishing everyone a good weekend,

      karen

       

    Viewing 2 reply threads
    • Replies
        • January 15, 2012 at 8:54 pm
        NYKaren
        Participant

          I went from Friday feeling cautiously optimistic to today freaking out.

          Now, since I'm seeing Dr. Halpern tomorrow, I'm worried that if he zaps off too much, then there won't be enough measurable disease to be in an anti PD-1 trial.  But some of the sats are getting bigger…

          I hate the days leading up to a doc app't almost as much as I hate the days after scans.  I think I'm going to take an Ativan. 

          I just read the above and it sounds like i'm feeling sorry for myself.  After all, I'm not even stage IV…only IIIC.  Some of you are dealing with a lot worse than I am.  I do know that I can become IV in the blink of an eye.   I wonder if that's what's scaring me so much, or is it just the fear of the unknown?

          karen

            • January 19, 2012 at 3:44 pm
            MariaH
            Participant

              Definitely the unknown Karen…. sometimes I just wish that there was a clear choice – everything is such a crap shoot.  We are at the same fork in the road for Dave (although stage IV) – do we have him continue on the Temodar because he's stable?  Or switch to IPI because he's off the steroids?  Or try to get him into an anti-pd1 trial?

              I wish we knew the results before he started.

              I know how you feel, hugs to you…

              Maria

              • January 19, 2012 at 3:44 pm
              MariaH
              Participant

                Definitely the unknown Karen…. sometimes I just wish that there was a clear choice – everything is such a crap shoot.  We are at the same fork in the road for Dave (although stage IV) – do we have him continue on the Temodar because he's stable?  Or switch to IPI because he's off the steroids?  Or try to get him into an anti-pd1 trial?

                I wish we knew the results before he started.

                I know how you feel, hugs to you…

                Maria

                • January 19, 2012 at 3:44 pm
                MariaH
                Participant

                  Definitely the unknown Karen…. sometimes I just wish that there was a clear choice – everything is such a crap shoot.  We are at the same fork in the road for Dave (although stage IV) – do we have him continue on the Temodar because he's stable?  Or switch to IPI because he's off the steroids?  Or try to get him into an anti-pd1 trial?

                  I wish we knew the results before he started.

                  I know how you feel, hugs to you…

                  Maria

                • January 15, 2012 at 8:54 pm
                NYKaren
                Participant

                  I went from Friday feeling cautiously optimistic to today freaking out.

                  Now, since I'm seeing Dr. Halpern tomorrow, I'm worried that if he zaps off too much, then there won't be enough measurable disease to be in an anti PD-1 trial.  But some of the sats are getting bigger…

                  I hate the days leading up to a doc app't almost as much as I hate the days after scans.  I think I'm going to take an Ativan. 

                  I just read the above and it sounds like i'm feeling sorry for myself.  After all, I'm not even stage IV…only IIIC.  Some of you are dealing with a lot worse than I am.  I do know that I can become IV in the blink of an eye.   I wonder if that's what's scaring me so much, or is it just the fear of the unknown?

                  karen

                  • January 15, 2012 at 8:54 pm
                  NYKaren
                  Participant

                    I went from Friday feeling cautiously optimistic to today freaking out.

                    Now, since I'm seeing Dr. Halpern tomorrow, I'm worried that if he zaps off too much, then there won't be enough measurable disease to be in an anti PD-1 trial.  But some of the sats are getting bigger…

                    I hate the days leading up to a doc app't almost as much as I hate the days after scans.  I think I'm going to take an Ativan. 

                    I just read the above and it sounds like i'm feeling sorry for myself.  After all, I'm not even stage IV…only IIIC.  Some of you are dealing with a lot worse than I am.  I do know that I can become IV in the blink of an eye.   I wonder if that's what's scaring me so much, or is it just the fear of the unknown?

                    karen

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