Father of 2 dying and only option is compassionate use of MK-3475 but Merck said “no”
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Father of 2 dying and only option is compassionate use of MK-3475 but Merck said “no”

› Forums › General Melanoma Community › Father of 2 dying and only option is compassionate use of MK-3475 but Merck said “no”

  • Post
    • April 2, 2014 at 3:35 pm
    kccaddy23
    Participant

    We are desperate!  My brother has stage IV melanoma and was told there is nothing else they can do for him.  There is a drug (MK-3475) Anti-PD-1 inhibitor that is available for expanded access for compassionate use from Merck.  Since he had a seizure a couple of weeks ago and has new brain tumors they state he is not eligible. I’m hoping someone may know of a way to get an exception to the rule and get my brother access to this drug.  His doctor, Stephen Hodi from Dana Farber said Merck refused to allow him to receive the drug but would not put their refusal in writing.  We were told he only has weeks to live and that was last week so we are desperate for him to get this treatment.  We will sign anything releasing them of any liability if anything happens to him.  Please let me know if you have any suggestions or any other options you think we can try.  We are even open to anything at this point.  Thanks!!

Viewing 5 reply threads
  • Replies
      • April 2, 2014 at 4:39 pm
      mary1233
      Participant

      The phone number for Merck's compassionate care program is 1-800-672-6372. My understanding of when this was done before (unfortunately the patient died before Merck found a heart) is that there  was a facebook campaign that grew rapidly.

       

      Tell all your friends.

       

      Best of luck.

      • April 2, 2014 at 4:39 pm
      mary1233
      Participant

      The phone number for Merck's compassionate care program is 1-800-672-6372. My understanding of when this was done before (unfortunately the patient died before Merck found a heart) is that there  was a facebook campaign that grew rapidly.

       

      Tell all your friends.

       

      Best of luck.

      • April 2, 2014 at 4:39 pm
      mary1233
      Participant

      The phone number for Merck's compassionate care program is 1-800-672-6372. My understanding of when this was done before (unfortunately the patient died before Merck found a heart) is that there  was a facebook campaign that grew rapidly.

       

      Tell all your friends.

       

      Best of luck.

        • April 2, 2014 at 11:02 pm
        Maureen038
        Participant

        Put your plea on change.org with a picture of him and his family. Try to see if you can get any press to write a story about it. Good luck!!

        • April 3, 2014 at 1:32 pm
        Scuba Doc
        Participant

        My wife met with Dr. Hodi on Tuesday and has a similar problem —- She has been treated with radiosurgery and is being treated again tomorrow —don't know if your brother can be treated or not for the tumors (radiosurgery) — we also are waiting for Merck to start the 'expanded access program' but don't know if we will be eligible. As far as we know Merck has not granted any compassionate exemptions yet.

         We have been told by the doctors at Dana Farber that the expanded access program will start soon. My wife says that she would like to talk to you if you wish —let me know and God bless

        • April 3, 2014 at 1:32 pm
        Scuba Doc
        Participant

        My wife met with Dr. Hodi on Tuesday and has a similar problem —- She has been treated with radiosurgery and is being treated again tomorrow —don't know if your brother can be treated or not for the tumors (radiosurgery) — we also are waiting for Merck to start the 'expanded access program' but don't know if we will be eligible. As far as we know Merck has not granted any compassionate exemptions yet.

         We have been told by the doctors at Dana Farber that the expanded access program will start soon. My wife says that she would like to talk to you if you wish —let me know and God bless

        • April 3, 2014 at 1:32 pm
        Scuba Doc
        Participant

        My wife met with Dr. Hodi on Tuesday and has a similar problem —- She has been treated with radiosurgery and is being treated again tomorrow —don't know if your brother can be treated or not for the tumors (radiosurgery) — we also are waiting for Merck to start the 'expanded access program' but don't know if we will be eligible. As far as we know Merck has not granted any compassionate exemptions yet.

         We have been told by the doctors at Dana Farber that the expanded access program will start soon. My wife says that she would like to talk to you if you wish —let me know and God bless

        • April 2, 2014 at 11:02 pm
        Maureen038
        Participant

        Put your plea on change.org with a picture of him and his family. Try to see if you can get any press to write a story about it. Good luck!!

        • April 2, 2014 at 11:02 pm
        Maureen038
        Participant

        Put your plea on change.org with a picture of him and his family. Try to see if you can get any press to write a story about it. Good luck!!

        • April 3, 2014 at 10:01 pm
        kccaddy23
        Participant

        Thanks we called them and they didn't do anything.  They are saying his disease is too far progressed.

        • April 3, 2014 at 10:01 pm
        kccaddy23
        Participant

        Thanks we called them and they didn't do anything.  They are saying his disease is too far progressed.

        • April 3, 2014 at 10:01 pm
        kccaddy23
        Participant

        Thanks we called them and they didn't do anything.  They are saying his disease is too far progressed.

      • April 4, 2014 at 12:11 am
      Tim–MRF
      Guest

      I am sorry to hear about your brother. I can't imagine how challenging this is for the entire family.

      I have a couple of comments and a couple of questions.  These protocols are developed in conjunction with the FDA, so the company doesn't always have as much latitude as it may appear to make exceptions. They can, under rare circumstances, do a trial of one patient but that takes a lot of work.

      The EAP Merck has launched allows for patients with stable brain mets to participate. This is actually quite unusual; most trials and studies exclude them completely.

      I am curious if Dr. Hodi was evaluating him for the EAP or for a standard trial. I was looking for sites that had the EAP open a few days ago and at that time couldn't find any place that had the program running.  If he wasn't looking at the EAP guidelines then that channel might be more flexible.

      Tim–MRF

      • April 4, 2014 at 12:11 am
      Tim–MRF
      Guest

      I am sorry to hear about your brother. I can't imagine how challenging this is for the entire family.

      I have a couple of comments and a couple of questions.  These protocols are developed in conjunction with the FDA, so the company doesn't always have as much latitude as it may appear to make exceptions. They can, under rare circumstances, do a trial of one patient but that takes a lot of work.

      The EAP Merck has launched allows for patients with stable brain mets to participate. This is actually quite unusual; most trials and studies exclude them completely.

      I am curious if Dr. Hodi was evaluating him for the EAP or for a standard trial. I was looking for sites that had the EAP open a few days ago and at that time couldn't find any place that had the program running.  If he wasn't looking at the EAP guidelines then that channel might be more flexible.

      Tim–MRF

      • April 4, 2014 at 12:11 am
      Tim–MRF
      Guest

      I am sorry to hear about your brother. I can't imagine how challenging this is for the entire family.

      I have a couple of comments and a couple of questions.  These protocols are developed in conjunction with the FDA, so the company doesn't always have as much latitude as it may appear to make exceptions. They can, under rare circumstances, do a trial of one patient but that takes a lot of work.

      The EAP Merck has launched allows for patients with stable brain mets to participate. This is actually quite unusual; most trials and studies exclude them completely.

      I am curious if Dr. Hodi was evaluating him for the EAP or for a standard trial. I was looking for sites that had the EAP open a few days ago and at that time couldn't find any place that had the program running.  If he wasn't looking at the EAP guidelines then that channel might be more flexible.

      Tim–MRF

        • April 4, 2014 at 6:49 pm
        Cooper
        Participant

        Tim, I disagree from what I've read about trials for myself.  Actually if your brain mets are stable after radiation you can get into clinical trials.  EAP guidelines are more flexible than a regular trial.  But if there's meningeal disease there really is not treatment that is workable and that's what happened to the young man and family from Colorado who were refused the compassionate use.

        • April 4, 2014 at 6:49 pm
        Cooper
        Participant

        Tim, I disagree from what I've read about trials for myself.  Actually if your brain mets are stable after radiation you can get into clinical trials.  EAP guidelines are more flexible than a regular trial.  But if there's meningeal disease there really is not treatment that is workable and that's what happened to the young man and family from Colorado who were refused the compassionate use.

        • April 4, 2014 at 6:49 pm
        Cooper
        Participant

        Tim, I disagree from what I've read about trials for myself.  Actually if your brain mets are stable after radiation you can get into clinical trials.  EAP guidelines are more flexible than a regular trial.  But if there's meningeal disease there really is not treatment that is workable and that's what happened to the young man and family from Colorado who were refused the compassionate use.

        • April 6, 2014 at 1:36 am
        kccaddy23
        Participant

        Thank you everyone for your responses. I believe the issue is his brain mets have been unstable so that is why he doesn't qualify. Dr. Hodi and his team have tried to help him get access to the drug but looks like Merck will not approve him to receive it under EAP. Now we just have to pray for a miracle or that Merck changes their mind. 

        • April 6, 2014 at 1:36 am
        kccaddy23
        Participant

        Thank you everyone for your responses. I believe the issue is his brain mets have been unstable so that is why he doesn't qualify. Dr. Hodi and his team have tried to help him get access to the drug but looks like Merck will not approve him to receive it under EAP. Now we just have to pray for a miracle or that Merck changes their mind. 

        • April 6, 2014 at 1:36 am
        kccaddy23
        Participant

        Thank you everyone for your responses. I believe the issue is his brain mets have been unstable so that is why he doesn't qualify. Dr. Hodi and his team have tried to help him get access to the drug but looks like Merck will not approve him to receive it under EAP. Now we just have to pray for a miracle or that Merck changes their mind. 

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