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  • Post
    • October 7, 2012 at 4:13 pm
    sharmon
    Participant

      Not sure where to start,  Brent has been doing fine on  GSK MEk and Alimta trial.  Almost 32 months.  Two months ago he had pain in his kidneys and last week after the scan to that area the urologist  announced that the 2 stones seen on the scans could not be causing his pain.  So he orderd another  test and it is showing a dark spot in his spine.  We got a copy of the films to take with us  to Houston next week and we can clearly see the area.  Also some spots near the ribs of the  pain area.

      Not sure where to start,  Brent has been doing fine on  GSK MEk and Alimta trial.  Almost 32 months.  Two months ago he had pain in his kidneys and last week after the scan to that area the urologist  announced that the 2 stones seen on the scans could not be causing his pain.  So he orderd another  test and it is showing a dark spot in his spine.  We got a copy of the films to take with us  to Houston next week and we can clearly see the area.  Also some spots near the ribs of the  pain area.

      We see the  local doctor on Tuesday.  We are devastated and the waiting for the radiologist report is the hardest thing ever.  He is in alot of discomfort and is saying we need to know what it is so we can get on with treatment, the pain is unbearable.

      Somethimes you think you are sailing along and Wham! out of the blue.  Brent will be 65 on Monday and is in good health otherwise.  I am now looking on the internet for treatment options again, and I don't see any Anti-PD-1 trials open.  He will probably be dropped the the GSK trial for progression. 

      I read here everyday and see a lot of hope coming from many who are survivors,  I need some of that hope right now sent my way. 

      Prayers of all of you,

      Sharon and Brent

       

    Viewing 8 reply threads
    • Replies
        • October 7, 2012 at 4:36 pm
        lhaley
        Participant

          I'm so sorry Brent is being through into this mess again.   There was an onpening a few weeks ago in Pineville NC which is near Charlotte.  It is a different company but I think it's similar to ANTIpd1.  I'll try and find it to link for you.

           

          The rollercoaster of melanoma is such an emotional issue.

          Linda

          • October 7, 2012 at 4:36 pm
          lhaley
          Participant

            I'm so sorry Brent is being through into this mess again.   There was an onpening a few weeks ago in Pineville NC which is near Charlotte.  It is a different company but I think it's similar to ANTIpd1.  I'll try and find it to link for you.

             

            The rollercoaster of melanoma is such an emotional issue.

            Linda

            • October 7, 2012 at 4:36 pm
            lhaley
            Participant

              I'm so sorry Brent is being through into this mess again.   There was an onpening a few weeks ago in Pineville NC which is near Charlotte.  It is a different company but I think it's similar to ANTIpd1.  I'll try and find it to link for you.

               

              The rollercoaster of melanoma is such an emotional issue.

              Linda

              • October 8, 2012 at 5:24 pm
              awillett1991
              Participant
                This might be your best bet. Was supposed to open in Sept but it should be really soon! Call down to MDA and ask about it.

                http://clinicaltrials.gov/ct2/show/NCT01621490

                • October 8, 2012 at 5:24 pm
                awillett1991
                Participant
                  This might be your best bet. Was supposed to open in Sept but it should be really soon! Call down to MDA and ask about it.

                  http://clinicaltrials.gov/ct2/show/NCT01621490

                  • October 8, 2012 at 5:24 pm
                  awillett1991
                  Participant
                    This might be your best bet. Was supposed to open in Sept but it should be really soon! Call down to MDA and ask about it.

                    http://clinicaltrials.gov/ct2/show/NCT01621490

                    • October 9, 2012 at 3:13 pm
                    Napa K
                    Participant

                      Hi Sharon-

                      I don't know where you are in terms of travel but try calling Angeles Clinic in Santa Monica to see the status of their anti-PD1 trials.  I am currently on trial there and have had a great experience.  If you would like to contact me directly off the board, please do so.  [email protected].  Best of luck in this scary time.

                      • October 9, 2012 at 3:13 pm
                      Napa K
                      Participant

                        Hi Sharon-

                        I don't know where you are in terms of travel but try calling Angeles Clinic in Santa Monica to see the status of their anti-PD1 trials.  I am currently on trial there and have had a great experience.  If you would like to contact me directly off the board, please do so.  [email protected].  Best of luck in this scary time.

                        • October 9, 2012 at 3:13 pm
                        Napa K
                        Participant

                          Hi Sharon-

                          I don't know where you are in terms of travel but try calling Angeles Clinic in Santa Monica to see the status of their anti-PD1 trials.  I am currently on trial there and have had a great experience.  If you would like to contact me directly off the board, please do so.  [email protected].  Best of luck in this scary time.

                      Viewing 8 reply threads
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