Can’t believe it!

Forums General Melanoma Community Can’t believe it!

  • Post
    sharmon
    Participant

      Brent was at Dr. Webers office on Wednesday and was told MERCK Anti pd-1 trial had an opening for him and it was in about 3 weeks.   Got a call today from his nurse after we called to find out about upcoming scans and blood work  and  the trial cordinator  used the word ( accural ) .   The long and short of it is that the trial is full.   The company is not taking anymore people.

      Brent was at Dr. Webers office on Wednesday and was told MERCK Anti pd-1 trial had an opening for him and it was in about 3 weeks.   Got a call today from his nurse after we called to find out about upcoming scans and blood work  and  the trial cordinator  used the word ( accural ) .   The long and short of it is that the trial is full.   The company is not taking anymore people. What can a person do to keep from losing their flippin mind.  There has got to be a better way to manage these  trials from the drug companies.  People are dying and the new drugs are out there!

    Viewing 17 reply threads
    • Replies
        rosa1
        Participant

          I've heard Mayo Jacksonville, Fl has PD1(Merck) slots opening.  You should call them and find out, here's the link:

           http://www.mayoclinic.org/becomingpat-jax/appointments.html

          rosa1
          Participant

            I've heard Mayo Jacksonville, Fl has PD1(Merck) slots opening.  You should call them and find out, here's the link:

             http://www.mayoclinic.org/becomingpat-jax/appointments.html

            rosa1
            Participant

              I've heard Mayo Jacksonville, Fl has PD1(Merck) slots opening.  You should call them and find out, here's the link:

               http://www.mayoclinic.org/becomingpat-jax/appointments.html

              killmel
              Participant

                Hi,

                 

                If you are willing to travel because you have run out of options, UCLA Medical Center has a Merck PD1 trial recruiting now.

                Merck started a new arm to their PD1 trial which patients are randomized to either 10mg or 2 mg of the drug.

                As you are seeing, these slots fill quickly, may I sugggest you email or call  Dr. Ribas to see if there are still any openings.  I understand that Dr.Ribas  does respond to his emails, no so much his phone because he is not in his office very much

                aribas@mednet.ucla.edu
                310 206-3928

                Good Luck, please letus know what you find out about the Merck trial atUCLA so it can help us all.

                Danny

                killmel
                Participant

                  Hi,

                   

                  If you are willing to travel because you have run out of options, UCLA Medical Center has a Merck PD1 trial recruiting now.

                  Merck started a new arm to their PD1 trial which patients are randomized to either 10mg or 2 mg of the drug.

                  As you are seeing, these slots fill quickly, may I sugggest you email or call  Dr. Ribas to see if there are still any openings.  I understand that Dr.Ribas  does respond to his emails, no so much his phone because he is not in his office very much

                  aribas@mednet.ucla.edu
                  310 206-3928

                  Good Luck, please letus know what you find out about the Merck trial atUCLA so it can help us all.

                  Danny

                  killmel
                  Participant

                    Hi,

                     

                    If you are willing to travel because you have run out of options, UCLA Medical Center has a Merck PD1 trial recruiting now.

                    Merck started a new arm to their PD1 trial which patients are randomized to either 10mg or 2 mg of the drug.

                    As you are seeing, these slots fill quickly, may I sugggest you email or call  Dr. Ribas to see if there are still any openings.  I understand that Dr.Ribas  does respond to his emails, no so much his phone because he is not in his office very much

                    aribas@mednet.ucla.edu
                    310 206-3928

                    Good Luck, please letus know what you find out about the Merck trial atUCLA so it can help us all.

                    Danny

                      NYKaren
                      Participant
                        I also heard that Merck is opening another cohort, but you never know how long it will REALLY take!
                        NYKaren
                        Participant
                          I also heard that Merck is opening another cohort, but you never know how long it will REALLY take!
                          NYKaren
                          Participant
                            I also heard that Merck is opening another cohort, but you never know how long it will REALLY take!
                          King
                          Participant

                            Sharon,

                             

                            I am so sorry to read this.  When we talked on Saturday, it sounded like a good trial for Brent and no traveling for a change would have been wonderful.  Keep us posted as to what happens at MDA this week.  Thinking of both of you.

                            Stay Strong
                            Kathie

                            Stage IV  7/05  Liver mets

                            King
                            Participant

                              Sharon,

                               

                              I am so sorry to read this.  When we talked on Saturday, it sounded like a good trial for Brent and no traveling for a change would have been wonderful.  Keep us posted as to what happens at MDA this week.  Thinking of both of you.

                              Stay Strong
                              Kathie

                              Stage IV  7/05  Liver mets

                              King
                              Participant

                                Sharon,

                                 

                                I am so sorry to read this.  When we talked on Saturday, it sounded like a good trial for Brent and no traveling for a change would have been wonderful.  Keep us posted as to what happens at MDA this week.  Thinking of both of you.

                                Stay Strong
                                Kathie

                                Stage IV  7/05  Liver mets

                                swissfarm7
                                Participant

                                  "What can a person do to keep from losing their flippin mind.  There has got to be a better way to manage these trials from the drug companies."

                                  My thoughts exactly, and we're only a few months out from my husband's Stage 3B diagnosis.  I spent a ton of time looking into various trials ~ those that might particularly relate to him and trials in general ~ and more than anything, it was an exercise in frustration.   It feels so utterly non-human, like people whose lives are in the balance are nothing more than robotic guinea pigs.  On the flip side, I know there are a wealth of people working away at this who would indeed love to find a better way. 

                                  So sorry you're dealing with this.

                                  Warmly,

                                  Colleen

                                  swissfarm7
                                  Participant

                                    "What can a person do to keep from losing their flippin mind.  There has got to be a better way to manage these trials from the drug companies."

                                    My thoughts exactly, and we're only a few months out from my husband's Stage 3B diagnosis.  I spent a ton of time looking into various trials ~ those that might particularly relate to him and trials in general ~ and more than anything, it was an exercise in frustration.   It feels so utterly non-human, like people whose lives are in the balance are nothing more than robotic guinea pigs.  On the flip side, I know there are a wealth of people working away at this who would indeed love to find a better way. 

                                    So sorry you're dealing with this.

                                    Warmly,

                                    Colleen

                                    swissfarm7
                                    Participant

                                      "What can a person do to keep from losing their flippin mind.  There has got to be a better way to manage these trials from the drug companies."

                                      My thoughts exactly, and we're only a few months out from my husband's Stage 3B diagnosis.  I spent a ton of time looking into various trials ~ those that might particularly relate to him and trials in general ~ and more than anything, it was an exercise in frustration.   It feels so utterly non-human, like people whose lives are in the balance are nothing more than robotic guinea pigs.  On the flip side, I know there are a wealth of people working away at this who would indeed love to find a better way. 

                                      So sorry you're dealing with this.

                                      Warmly,

                                      Colleen

                                      sharmon
                                      Participant

                                        Thanks everyone for being there and your suggestions.  It is comforting knowing there are people to connect to and who care. 

                                        I tried for hours to reach someone from Mayo and only got to a person who could set appointment.

                                        I called the number for UCLA and the doctor himself called me back.  He said that Merck will be opening other slots in November and I should call him back in three weeks.   What a difference to my mind knowing that there is still hope and we can keep fighting.

                                         

                                        sharmon
                                        Participant

                                          Thanks everyone for being there and your suggestions.  It is comforting knowing there are people to connect to and who care. 

                                          I tried for hours to reach someone from Mayo and only got to a person who could set appointment.

                                          I called the number for UCLA and the doctor himself called me back.  He said that Merck will be opening other slots in November and I should call him back in three weeks.   What a difference to my mind knowing that there is still hope and we can keep fighting.

                                           

                                          sharmon
                                          Participant

                                            Thanks everyone for being there and your suggestions.  It is comforting knowing there are people to connect to and who care. 

                                            I tried for hours to reach someone from Mayo and only got to a person who could set appointment.

                                            I called the number for UCLA and the doctor himself called me back.  He said that Merck will be opening other slots in November and I should call him back in three weeks.   What a difference to my mind knowing that there is still hope and we can keep fighting.

                                             

                                            lhaley
                                            Participant

                                              Try and call Sarah Cannon in Nashville.  I know they had openings awhile back.  

                                              Linda

                                                NYKaren
                                                Participant

                                                  Great news.  I'm so glad to hear it.

                                                  all the best,

                                                  karen

                                                  killmel
                                                  Participant

                                                    Hi Sharmon,

                                                    if you call this number 1-888-577-8839, they can provide the location & contact telephone numbers for Merck  study of MK -3475.  clinical trial ID # NCT01295827

                                                    They should be able to put you in touch with the person at Mayo clinic responsible for merck trial.

                                                    Good Luck!

                                                    Monica

                                                    killmel
                                                    Participant

                                                      Hi Sharmon,

                                                      if you call this number 1-888-577-8839, they can provide the location & contact telephone numbers for Merck  study of MK -3475.  clinical trial ID # NCT01295827

                                                      They should be able to put you in touch with the person at Mayo clinic responsible for merck trial.

                                                      Good Luck!

                                                      Monica

                                                      killmel
                                                      Participant

                                                        Hi Sharmon,

                                                        if you call this number 1-888-577-8839, they can provide the location & contact telephone numbers for Merck  study of MK -3475.  clinical trial ID # NCT01295827

                                                        They should be able to put you in touch with the person at Mayo clinic responsible for merck trial.

                                                        Good Luck!

                                                        Monica

                                                        NYKaren
                                                        Participant

                                                          Great news.  I'm so glad to hear it.

                                                          all the best,

                                                          karen

                                                          NYKaren
                                                          Participant

                                                            Great news.  I'm so glad to hear it.

                                                            all the best,

                                                            karen

                                                          lhaley
                                                          Participant

                                                            Try and call Sarah Cannon in Nashville.  I know they had openings awhile back.  

                                                            Linda

                                                            lhaley
                                                            Participant

                                                              Try and call Sarah Cannon in Nashville.  I know they had openings awhile back.  

                                                              Linda

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