Can’t believe it!
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Can’t believe it!

› Forums › General Melanoma Community › Can’t believe it!

  • Post
    • October 15, 2012 at 6:37 pm
    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
      • October 15, 2012 at 6:49 pm
      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

      • October 15, 2012 at 6:49 pm
      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

      • October 15, 2012 at 6:49 pm
      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

      • October 15, 2012 at 8:13 pm
      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

      • October 15, 2012 at 8:13 pm
      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

      • October 15, 2012 at 8:13 pm
      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

        • October 15, 2012 at 10:24 pm
        NYKaren
        Participant
        I also heard that Merck is opening another cohort, but you never know how long it will REALLY take!
        • October 15, 2012 at 10:24 pm
        NYKaren
        Participant
        I also heard that Merck is opening another cohort, but you never know how long it will REALLY take!
        • October 15, 2012 at 10:24 pm
        NYKaren
        Participant
        I also heard that Merck is opening another cohort, but you never know how long it will REALLY take!
      • October 16, 2012 at 3:04 am
      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

      • October 16, 2012 at 3:04 am
      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

      • October 16, 2012 at 3:04 am
      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

      • October 16, 2012 at 4:33 am
      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

      • October 16, 2012 at 4:33 am
      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

      • October 16, 2012 at 4:33 am
      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

      • October 16, 2012 at 11:18 am
      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.

       

      • October 16, 2012 at 11:18 am
      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.

       

      • October 16, 2012 at 11:18 am
      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.

       

      • October 16, 2012 at 2:49 pm
      lhaley
      Participant

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

      Linda

        • October 16, 2012 at 10:46 pm
        NYKaren
        Participant

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

        all the best,

        karen

        • October 16, 2012 at 11:01 pm
        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

        • October 16, 2012 at 11:01 pm
        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

        • October 16, 2012 at 11:01 pm
        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

        • October 16, 2012 at 10:46 pm
        NYKaren
        Participant

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

        all the best,

        karen

        • October 16, 2012 at 10:46 pm
        NYKaren
        Participant

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

        all the best,

        karen

      • October 16, 2012 at 2:49 pm
      lhaley
      Participant

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

      Linda

      • October 16, 2012 at 2:49 pm
      lhaley
      Participant

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

      Linda

Viewing 17 reply threads
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