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brents anti pd 1 trial report
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brents anti pd 1 trial report

› Forums › General Melanoma Community › brents anti pd 1 trial report

  • Post
    • January 30, 2013 at 7:37 am
    sharmon
    Participant

      I will need to have all the the available now.  the trial is not working and he is in terrible pain in the hospital now.  he was to be scanned on the 6 of feb but they are moving it up to tomorrow .  then they are talking about radiation .  I will be asking questions and trying to find a way to  get more treatment.  he doesn't want to quit.  all of his pain can be treated with a inserted pain pumb under the skin and that is scheduled.  he was on the merck mek trial and did not fail the trial but moved to this trial when it became available. 

      I will need to have all the the available now.  the trial is not working and he is in terrible pain in the hospital now.  he was to be scanned on the 6 of feb but they are moving it up to tomorrow .  then they are talking about radiation .  I will be asking questions and trying to find a way to  get more treatment.  he doesn't want to quit.  all of his pain can be treated with a inserted pain pumb under the skin and that is scheduled.  he was on the merck mek trial and did not fail the trial but moved to this trial when it became available.  Jimmy B I need your input as well as others.  I still have mek on hand.  he is braf negative and was tested twice but not by the new test.  this was years ago.  HELP.  Ask me questions, give me hope. 

    Viewing 11 reply threads
    • Replies
        • January 30, 2013 at 12:21 pm
        melissa ann
        Participant

          HI Sharon, I am so sorry to hear that Brent is in so much pain again.  I hope they can get that under control so that both of you are able to think more clearly.  Is Dr. Weber offering any other options?  trials?  Is going back to MDA an option?  I am curious to hear others opinions on Brent going back on MEK since it seemed to keep Bren'ts disease at bay for awhile.  Dr. Hwu at MDA has mentioned a MEK/cdk4 trial possibly opening soon in phase 1.  Unfortunately, I dont have the details on that as of yet.  Please know that Peck and I think of you guys often and we will hope and pray for relief of his  pain and knowledge for the next best step.  Peace to both of you…Peck and Melissa

            • January 30, 2013 at 4:04 pm
            killmel
            Participant

              Melissa,

              It is so could to see your post. I was worried about you & Peck. How is Peck doing??? Did you find a treatment that is working for hiim.

              Wishing you & Peck the best and prayers,

              MaryBeth

              • January 30, 2013 at 4:04 pm
              killmel
              Participant

                Melissa,

                It is so could to see your post. I was worried about you & Peck. How is Peck doing??? Did you find a treatment that is working for hiim.

                Wishing you & Peck the best and prayers,

                MaryBeth

                • January 30, 2013 at 4:04 pm
                killmel
                Participant

                  Melissa,

                  It is so could to see your post. I was worried about you & Peck. How is Peck doing??? Did you find a treatment that is working for hiim.

                  Wishing you & Peck the best and prayers,

                  MaryBeth

                • January 30, 2013 at 12:21 pm
                melissa ann
                Participant

                  HI Sharon, I am so sorry to hear that Brent is in so much pain again.  I hope they can get that under control so that both of you are able to think more clearly.  Is Dr. Weber offering any other options?  trials?  Is going back to MDA an option?  I am curious to hear others opinions on Brent going back on MEK since it seemed to keep Bren'ts disease at bay for awhile.  Dr. Hwu at MDA has mentioned a MEK/cdk4 trial possibly opening soon in phase 1.  Unfortunately, I dont have the details on that as of yet.  Please know that Peck and I think of you guys often and we will hope and pray for relief of his  pain and knowledge for the next best step.  Peace to both of you…Peck and Melissa

                  • January 30, 2013 at 12:21 pm
                  melissa ann
                  Participant

                    HI Sharon, I am so sorry to hear that Brent is in so much pain again.  I hope they can get that under control so that both of you are able to think more clearly.  Is Dr. Weber offering any other options?  trials?  Is going back to MDA an option?  I am curious to hear others opinions on Brent going back on MEK since it seemed to keep Bren'ts disease at bay for awhile.  Dr. Hwu at MDA has mentioned a MEK/cdk4 trial possibly opening soon in phase 1.  Unfortunately, I dont have the details on that as of yet.  Please know that Peck and I think of you guys often and we will hope and pray for relief of his  pain and knowledge for the next best step.  Peace to both of you…Peck and Melissa

                    • January 30, 2013 at 2:47 pm
                    awillett1991
                    Participant
                      Knowing nothing about PD1 or MEK all I can say is that I am so sorry you both are suffering so much and I will pray for some peace, relief, and an answer to come soon. Have you posted on the MIF boards? Sometimes there is some interesting perspective there on what is going on in Europe. Did he have any success with Ipi? What about a reinduction?

                      Prayers,
                      Amy

                      • January 30, 2013 at 2:47 pm
                      awillett1991
                      Participant
                        Knowing nothing about PD1 or MEK all I can say is that I am so sorry you both are suffering so much and I will pray for some peace, relief, and an answer to come soon. Have you posted on the MIF boards? Sometimes there is some interesting perspective there on what is going on in Europe. Did he have any success with Ipi? What about a reinduction?

                        Prayers,
                        Amy

                        • January 30, 2013 at 2:47 pm
                        awillett1991
                        Participant
                          Knowing nothing about PD1 or MEK all I can say is that I am so sorry you both are suffering so much and I will pray for some peace, relief, and an answer to come soon. Have you posted on the MIF boards? Sometimes there is some interesting perspective there on what is going on in Europe. Did he have any success with Ipi? What about a reinduction?

                          Prayers,
                          Amy

                          • January 30, 2013 at 8:24 pm
                          Owl
                          Participant

                            Dear Sharon,

                            my thaughts are with you and Brent. I hope the doctors will be able to control the pain very soon.

                            I have no idea what to do in your situation, I just wish that your will have any questions answered, any options looked at and a good feeling with the decisions made. Always remember that you are strong. You have any right to get a clear picture of the situation, hold on!

                            All the best to you and Brent,

                            Jenny

                            • January 30, 2013 at 8:24 pm
                            Owl
                            Participant

                              Dear Sharon,

                              my thaughts are with you and Brent. I hope the doctors will be able to control the pain very soon.

                              I have no idea what to do in your situation, I just wish that your will have any questions answered, any options looked at and a good feeling with the decisions made. Always remember that you are strong. You have any right to get a clear picture of the situation, hold on!

                              All the best to you and Brent,

                              Jenny

                              • January 30, 2013 at 8:24 pm
                              Owl
                              Participant

                                Dear Sharon,

                                my thaughts are with you and Brent. I hope the doctors will be able to control the pain very soon.

                                I have no idea what to do in your situation, I just wish that your will have any questions answered, any options looked at and a good feeling with the decisions made. Always remember that you are strong. You have any right to get a clear picture of the situation, hold on!

                                All the best to you and Brent,

                                Jenny

                                • January 30, 2013 at 11:30 pm
                                sharmon
                                Participant

                                  if i had mek or could get some  compassioate use  we could do a reintroduction.

                                  • January 30, 2013 at 11:30 pm
                                  sharmon
                                  Participant

                                    if i had mek or could get some  compassioate use  we could do a reintroduction.

                                    • January 30, 2013 at 11:30 pm
                                    sharmon
                                    Participant

                                      if i had mek or could get some  compassioate use  we could do a reintroduction.

                                  Viewing 11 reply threads
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