Clinical Trial Decision
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Clinical Trial Decision

› Forums › General Melanoma Community › Clinical Trial Decision

  • Post
    • February 16, 2015 at 5:05 pm
    newmanmark
    Participant

    Hello,

    I live in Toronto, Canada and have stage 4 melanoma.  There is a clinical trial here in Toronto that is combining a BRAF inhibitor with a MEK inhibitor.  There are no PD1 trials available at the moment and the only way to obtain PD1 is to fail on BRAF and IPI.  The company will then grant compassionate use.

    I found a trial in Pittsburgh that will be opening in March that combines BRAF+MEK+PD1.  Here is the link.   https://clinicaltrials.gov/ct2/show/NCT02357732?term=PD1&rank=27

    It seems to me like there is more hope in a treatment involving PD1.  If I start the Canada trial I will no longer qualify for the US trial because I can not have prior use of a BRAF or MEK inhibitor.

    Obviously doing a trial outside of my country will present some challenges but I am willing to travel if it's a better option.  Does anyone have any thoughts or insight?  I'm not sure what to do at this point but have to make a decsion soon.

    Thanks

    Mark

Viewing 5 reply threads
  • Replies
      • February 16, 2015 at 8:42 pm
      Jubes
      Participant

      I had the same thing here in Australia and everything failed so I got the pd1 on compassionate grounds. The mass in my lung was 7.9 cm by then. I am doing great now. 

      I am not sure if I am reading all the results correctly but maybe Celeste or Ed can correct me if im wrong. It seems that the response to pd 1 is better with ipi naive patients. So it is annoying to have to fail on ipi to have to get to pembrolizumab. Although maybe all that means is that those who went through ipi have had the cancer for longer and it is more progressed….

       

      there is no substitute for a great melanoma specialist who can advise you on which way to go with this. I hope you have a good one there as we have here. I wish you all the best and hope whichever way you go that the treatment works well and we look forward to hearing about your experience. 

      • February 16, 2015 at 8:42 pm
      Jubes
      Participant

      I had the same thing here in Australia and everything failed so I got the pd1 on compassionate grounds. The mass in my lung was 7.9 cm by then. I am doing great now. 

      I am not sure if I am reading all the results correctly but maybe Celeste or Ed can correct me if im wrong. It seems that the response to pd 1 is better with ipi naive patients. So it is annoying to have to fail on ipi to have to get to pembrolizumab. Although maybe all that means is that those who went through ipi have had the cancer for longer and it is more progressed….

       

      there is no substitute for a great melanoma specialist who can advise you on which way to go with this. I hope you have a good one there as we have here. I wish you all the best and hope whichever way you go that the treatment works well and we look forward to hearing about your experience. 

      • February 16, 2015 at 8:42 pm
      Jubes
      Participant

      I had the same thing here in Australia and everything failed so I got the pd1 on compassionate grounds. The mass in my lung was 7.9 cm by then. I am doing great now. 

      I am not sure if I am reading all the results correctly but maybe Celeste or Ed can correct me if im wrong. It seems that the response to pd 1 is better with ipi naive patients. So it is annoying to have to fail on ipi to have to get to pembrolizumab. Although maybe all that means is that those who went through ipi have had the cancer for longer and it is more progressed….

       

      there is no substitute for a great melanoma specialist who can advise you on which way to go with this. I hope you have a good one there as we have here. I wish you all the best and hope whichever way you go that the treatment works well and we look forward to hearing about your experience. 

        • February 16, 2015 at 11:36 pm
        newmanmark
        Participant

        Hi Jubes.

        Thanks for writing.  My tumour is 8cm so we're in the same boat.  Mine is in my pancreas.  

        What has your response been on PD1?  Has it shrunk much?

        Cheers

        Mark

        • February 16, 2015 at 11:36 pm
        newmanmark
        Participant

        Hi Jubes.

        Thanks for writing.  My tumour is 8cm so we're in the same boat.  Mine is in my pancreas.  

        What has your response been on PD1?  Has it shrunk much?

        Cheers

        Mark

        • February 16, 2015 at 11:36 pm
        newmanmark
        Participant

        Hi Jubes.

        Thanks for writing.  My tumour is 8cm so we're in the same boat.  Mine is in my pancreas.  

        What has your response been on PD1?  Has it shrunk much?

        Cheers

        Mark

        • February 18, 2015 at 9:13 am
        Jubes
        Participant

        Hi Mark,

        I have had a great response with the tumour shrinking by 30% so far. I also had melanoma in my chest cavity in 3 or 4 nodes and on the last scan on jan 28 they were back to normal size. I have been on Pembrolizumab since Sept last year, so now onto my 9th cycle next week, but I started to feel better after the first or 2nd cycle.

        Just to be clear there was an amoount of fluid in the mass in my lung which they thought was sarcoidosis caused by my body trying to combat the tumour, so they couldnt tell how much of the 7.9 cm was melanoma and how much was fluid around it. The 30% is a reduction of the original size. ie it started at 5 cm, grew during various treatments to 7.9 and now it has about a 3 cm diameter.

        Hope it works as well for you.

        Anne-Louise

        • February 18, 2015 at 9:13 am
        Jubes
        Participant

        Hi Mark,

        I have had a great response with the tumour shrinking by 30% so far. I also had melanoma in my chest cavity in 3 or 4 nodes and on the last scan on jan 28 they were back to normal size. I have been on Pembrolizumab since Sept last year, so now onto my 9th cycle next week, but I started to feel better after the first or 2nd cycle.

        Just to be clear there was an amoount of fluid in the mass in my lung which they thought was sarcoidosis caused by my body trying to combat the tumour, so they couldnt tell how much of the 7.9 cm was melanoma and how much was fluid around it. The 30% is a reduction of the original size. ie it started at 5 cm, grew during various treatments to 7.9 and now it has about a 3 cm diameter.

        Hope it works as well for you.

        Anne-Louise

        • February 18, 2015 at 9:13 am
        Jubes
        Participant

        Hi Mark,

        I have had a great response with the tumour shrinking by 30% so far. I also had melanoma in my chest cavity in 3 or 4 nodes and on the last scan on jan 28 they were back to normal size. I have been on Pembrolizumab since Sept last year, so now onto my 9th cycle next week, but I started to feel better after the first or 2nd cycle.

        Just to be clear there was an amoount of fluid in the mass in my lung which they thought was sarcoidosis caused by my body trying to combat the tumour, so they couldnt tell how much of the 7.9 cm was melanoma and how much was fluid around it. The 30% is a reduction of the original size. ie it started at 5 cm, grew during various treatments to 7.9 and now it has about a 3 cm diameter.

        Hope it works as well for you.

        Anne-Louise

      • February 16, 2015 at 10:32 pm
      arthurjedi007
      Participant

      To my knowledge the best results according to the data so far is the ipi pd1 combo trial. They have it at mofffitt in Tampa and not sure where else.

      i was supposed to start on a braf mek ipi in 2013 but for many reasons it never happened for me. They also closed down part of the trial because of side affects. However my doc was saying they were having around 70% response rate just too toxic. I never saw that data just what that doc said. Hopefully with pd1 instead of ipi it will be less toxic. At that time I was so new I didn't realize 70% was good.

      Artie

      • February 16, 2015 at 10:32 pm
      arthurjedi007
      Participant

      To my knowledge the best results according to the data so far is the ipi pd1 combo trial. They have it at mofffitt in Tampa and not sure where else.

      i was supposed to start on a braf mek ipi in 2013 but for many reasons it never happened for me. They also closed down part of the trial because of side affects. However my doc was saying they were having around 70% response rate just too toxic. I never saw that data just what that doc said. Hopefully with pd1 instead of ipi it will be less toxic. At that time I was so new I didn't realize 70% was good.

      Artie

      • February 16, 2015 at 10:32 pm
      arthurjedi007
      Participant

      To my knowledge the best results according to the data so far is the ipi pd1 combo trial. They have it at mofffitt in Tampa and not sure where else.

      i was supposed to start on a braf mek ipi in 2013 but for many reasons it never happened for me. They also closed down part of the trial because of side affects. However my doc was saying they were having around 70% response rate just too toxic. I never saw that data just what that doc said. Hopefully with pd1 instead of ipi it will be less toxic. At that time I was so new I didn't realize 70% was good.

      Artie

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