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Will he respond to antiPD1?

Forums General Melanoma Community Will he respond to antiPD1?

  • Post
    Nadia
    Participant
    My husband was enrolled in the BMS ipi/nivo three arm trial, he showed both progression and new growth and was kicked out. When he was unblinded we found out he was on the ipi only arm. He is not eligible for the EAP Mercks trials since he is Braf positive and he never took any Braf drugs yet. He started two days ago to take Dabrafenib.
     
    The plan right now is to let Dabrafenib to do it's magic, for as long as it works, 8 months average, and then go for the antiPD1, hopefully available either as EAP or as standard care for people that failed ipi and Braf meds.
     
    But I do have this thing in mind that really stresses me out. As almost all the stats I read are saying that antiPD1, which as of today is everybody's dream treatment, is only working on 38% of the patients! what if Dave is one of the unlucky ones? Is there a test out there that tells if his melanoma cells are expressing PDL-1 and antiPD1 will work? I'd rather know this sooner rather than after months of unsuccessful treatment, and try to find another line of treatment, like TILs. 
     
    I would only hope that my answer lies on one of the tests that BMS performed on his blood and melanoma tissue they biopsied. I understand why BMS would not make this public information, they obviously don't want people leaving the trials when they find out antiPD1 doesn't work on them. I am not going to bring up any ethical issues I may have. I just want an answer: is there anywhere in US or Canada, heck, even in Europe a lab that would analyze Dave's blood or melanoma tissue and tell us if his melanoma would respond to antiPD1 or not?
    MariaS
     
    Posts: 7
    Joined: 24 Jan 2014 23:28
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Viewing 8 reply threads
  • Replies
      jim Breitfeller
      Participant

      Nadia, you should ask your oncologist to schedule a diagnostic test for PD-L1.

      Test Name: PD-L1 expression

       

      jim Breitfeller
      Participant

      Nadia, you should ask your oncologist to schedule a diagnostic test for PD-L1.

      Test Name: PD-L1 expression

       

        Nadia
        Participant

        We have an appointment in 3 weeks, I will definitelly ask for an appointment.  I didn't think he can schedule it, I was under the impression it's a very specialized test, not available on the normal channels.

        Nadia
        Participant

        We have an appointment in 3 weeks, I will definitelly ask for an appointment.  I didn't think he can schedule it, I was under the impression it's a very specialized test, not available on the normal channels.

        Nadia
        Participant

        We have an appointment in 3 weeks, I will definitelly ask for an appointment.  I didn't think he can schedule it, I was under the impression it's a very specialized test, not available on the normal channels.

      jim Breitfeller
      Participant

      Nadia, you should ask your oncologist to schedule a diagnostic test for PD-L1.

      Test Name: PD-L1 expression

       

      JerryfromFauq
      Participant

      There have been reports (Dr Weber) that there is a 17% response rate to the PD-1 treatment for people that test negative for the PD-L1.

      JerryfromFauq
      Participant

      There have been reports (Dr Weber) that there is a 17% response rate to the PD-1 treatment for people that test negative for the PD-L1.

        Nadia
        Participant

        Thanks Jerry. 

        Nadia
        Participant

        Thanks Jerry. 

        Nadia
        Participant

        Thanks Jerry. 

      JerryfromFauq
      Participant

      There have been reports (Dr Weber) that there is a 17% response rate to the PD-1 treatment for people that test negative for the PD-L1.

      tcell
      Participant

      Nadia,

      Thelatest publications I read seemed inconclusive about the role of PD-L1 expression in the response to Anti-PD1.

      The problem with melanoma is (and that is mine too) that you cannot anticipate everything and we are not statistics.

      I am on Dabrafenib and Trametenib at the moment (why does your huspand not get Trametinib with Dabrafenib)? In the center where I am treated there are people who have been taking Dabrafenib for more than 2 years and it is still working fine for them! So I would not just read the stats and jump to the conclusion that by the beginning for next year you have to switch to something else.

      THere never was a treatment before for melanoma with 40% response rate. I know this does not seem a lot but for Anti-PD1 your husband might react much quicker than to Ipi.

      It seems terribly hard but my experience after only 3 months on a rollercoaster is that playing the what if game never helps!

      tcell
      Participant

      Nadia,

      Thelatest publications I read seemed inconclusive about the role of PD-L1 expression in the response to Anti-PD1.

      The problem with melanoma is (and that is mine too) that you cannot anticipate everything and we are not statistics.

      I am on Dabrafenib and Trametenib at the moment (why does your huspand not get Trametinib with Dabrafenib)? In the center where I am treated there are people who have been taking Dabrafenib for more than 2 years and it is still working fine for them! So I would not just read the stats and jump to the conclusion that by the beginning for next year you have to switch to something else.

      THere never was a treatment before for melanoma with 40% response rate. I know this does not seem a lot but for Anti-PD1 your husband might react much quicker than to Ipi.

      It seems terribly hard but my experience after only 3 months on a rollercoaster is that playing the what if game never helps!

        Nadia
        Participant

        I do not believe in statistics either, according to the initial dx my husband should have been dead last month.  He is still strong and I want to keep him this way.  I know antiPD1 is, at this point, the best option out there, but it's not the Holly Grail for everybody.  One thing I've learned about melanoma is how unpredictable it is.  The other one is the race against time.  If there's a way of telling if antiPD1 it's not going to work, and the test is reliable enough, then why not try something else first, like TIL, or another type of targeted terapy.  For now we're good, we can keep on taking the braf meds, hopefully he will respond for at least 1 year, and by then maybe another miracle treatment comes along.  But we need to be knoledgeable and prepared for any curved ball melanoma is going to throw at us.

         

        Nadia
        Participant

        I do not believe in statistics either, according to the initial dx my husband should have been dead last month.  He is still strong and I want to keep him this way.  I know antiPD1 is, at this point, the best option out there, but it's not the Holly Grail for everybody.  One thing I've learned about melanoma is how unpredictable it is.  The other one is the race against time.  If there's a way of telling if antiPD1 it's not going to work, and the test is reliable enough, then why not try something else first, like TIL, or another type of targeted terapy.  For now we're good, we can keep on taking the braf meds, hopefully he will respond for at least 1 year, and by then maybe another miracle treatment comes along.  But we need to be knoledgeable and prepared for any curved ball melanoma is going to throw at us.

         

        sofistef
        Participant

        Hi Nadia,

         

        If your husband was on phase 3 NIvo/ippi/ippi+nivo he should have been tested for this as this result is one of the randomization criteria along with Braf if I remember corectly. Do you remember if they harvested some tumor tissue at the begining of the trial?

        Ask your oncoligist, he should know

         

        Dana

        sofistef
        Participant

        Hi Nadia,

         

        If your husband was on phase 3 NIvo/ippi/ippi+nivo he should have been tested for this as this result is one of the randomization criteria along with Braf if I remember corectly. Do you remember if they harvested some tumor tissue at the begining of the trial?

        Ask your oncoligist, he should know

         

        Dana

        Nadia
        Participant

        Yes, he had tumour tissue harvested at the beginning of the trial but I was not aware I can ask for the results of the biopsy and BMS never volunteered.  We knew before we applied for the trial that hubs is Braf positive.  We have an appointment in two weeks and I will ask the dr.if hubs was tested for PDL1 expression, but to be perfectly onest I'm not sure how to use the information.  It's sad, but like Jerry said above (and confirmed from several sources), even without expressed PDL1  there is still a 17% chance it may work.  TIL has a 18% chance of success! but high toxicity and the targeted therapies even less.

        I am highly anxious about all this situation.  On one hand we have a highly intelligent disease able to switch gears and adapt and go around treatments and invade and destroy all inside the body, and on the other hand we have a handful of treatments, none of them with more than 40% chance of success.  But despite the odds, we are not giving up, we keep the hope high, and we are ready to fight. 

         

         

        Nadia
        Participant

        Yes, he had tumour tissue harvested at the beginning of the trial but I was not aware I can ask for the results of the biopsy and BMS never volunteered.  We knew before we applied for the trial that hubs is Braf positive.  We have an appointment in two weeks and I will ask the dr.if hubs was tested for PDL1 expression, but to be perfectly onest I'm not sure how to use the information.  It's sad, but like Jerry said above (and confirmed from several sources), even without expressed PDL1  there is still a 17% chance it may work.  TIL has a 18% chance of success! but high toxicity and the targeted therapies even less.

        I am highly anxious about all this situation.  On one hand we have a highly intelligent disease able to switch gears and adapt and go around treatments and invade and destroy all inside the body, and on the other hand we have a handful of treatments, none of them with more than 40% chance of success.  But despite the odds, we are not giving up, we keep the hope high, and we are ready to fight. 

         

         

        Nadia
        Participant

        Yes, he had tumour tissue harvested at the beginning of the trial but I was not aware I can ask for the results of the biopsy and BMS never volunteered.  We knew before we applied for the trial that hubs is Braf positive.  We have an appointment in two weeks and I will ask the dr.if hubs was tested for PDL1 expression, but to be perfectly onest I'm not sure how to use the information.  It's sad, but like Jerry said above (and confirmed from several sources), even without expressed PDL1  there is still a 17% chance it may work.  TIL has a 18% chance of success! but high toxicity and the targeted therapies even less.

        I am highly anxious about all this situation.  On one hand we have a highly intelligent disease able to switch gears and adapt and go around treatments and invade and destroy all inside the body, and on the other hand we have a handful of treatments, none of them with more than 40% chance of success.  But despite the odds, we are not giving up, we keep the hope high, and we are ready to fight. 

         

         

        sofistef
        Participant

        Hi Nadia,

         

        If your husband was on phase 3 NIvo/ippi/ippi+nivo he should have been tested for this as this result is one of the randomization criteria along with Braf if I remember corectly. Do you remember if they harvested some tumor tissue at the begining of the trial?

        Ask your oncoligist, he should know

         

        Dana

        Nadia
        Participant

        I do not believe in statistics either, according to the initial dx my husband should have been dead last month.  He is still strong and I want to keep him this way.  I know antiPD1 is, at this point, the best option out there, but it's not the Holly Grail for everybody.  One thing I've learned about melanoma is how unpredictable it is.  The other one is the race against time.  If there's a way of telling if antiPD1 it's not going to work, and the test is reliable enough, then why not try something else first, like TIL, or another type of targeted terapy.  For now we're good, we can keep on taking the braf meds, hopefully he will respond for at least 1 year, and by then maybe another miracle treatment comes along.  But we need to be knoledgeable and prepared for any curved ball melanoma is going to throw at us.

         

        Nadia
        Participant

        I do not believe in statistics either, according to the initial dx my husband should have been dead last month.  He is still strong and I want to keep him this way.  I know antiPD1 is, at this point, the best option out there, but it's not the Holly Grail for everybody.  One thing I've learned about melanoma is how unpredictable it is.  The other one is the race against time.  If there's a way of telling if antiPD1 it's not going to work, and the test is reliable enough, then why not try something else first, like TIL, or another type of targeted terapy.  For now we're good, we can keep on taking the braf meds, hopefully he will respond for at least 1 year, and by then maybe another miracle treatment comes along.  But we need to be knoledgeable and prepared for any curved ball melanoma is going to throw at us.

         

        Nadia
        Participant

        I do not believe in statistics either, according to the initial dx my husband should have been dead last month.  He is still strong and I want to keep him this way.  I know antiPD1 is, at this point, the best option out there, but it's not the Holly Grail for everybody.  One thing I've learned about melanoma is how unpredictable it is.  The other one is the race against time.  If there's a way of telling if antiPD1 it's not going to work, and the test is reliable enough, then why not try something else first, like TIL, or another type of targeted terapy.  For now we're good, we can keep on taking the braf meds, hopefully he will respond for at least 1 year, and by then maybe another miracle treatment comes along.  But we need to be knoledgeable and prepared for any curved ball melanoma is going to throw at us.

         

        Nadia
        Participant

        I do not believe in statistics either, according to the initial dx my husband should have been dead last month.  He is still strong and I want to keep him this way.  I know antiPD1 is, at this point, the best option out there, but it's not the Holly Grail for everybody.  One thing I've learned about melanoma is how unpredictable it is.  The other one is the race against time.  If there's a way of telling if antiPD1 it's not going to work, and the test is reliable enough, then why not try something else first, like TIL, or another type of targeted terapy.  For now we're good, we can keep on taking the braf meds, hopefully he will respond for at least 1 year, and by then maybe another miracle treatment comes along.  But we need to be knoledgeable and prepared for any curved ball melanoma is going to throw at us.

         

      tcell
      Participant

      Nadia,

      Thelatest publications I read seemed inconclusive about the role of PD-L1 expression in the response to Anti-PD1.

      The problem with melanoma is (and that is mine too) that you cannot anticipate everything and we are not statistics.

      I am on Dabrafenib and Trametenib at the moment (why does your huspand not get Trametinib with Dabrafenib)? In the center where I am treated there are people who have been taking Dabrafenib for more than 2 years and it is still working fine for them! So I would not just read the stats and jump to the conclusion that by the beginning for next year you have to switch to something else.

      THere never was a treatment before for melanoma with 40% response rate. I know this does not seem a lot but for Anti-PD1 your husband might react much quicker than to Ipi.

      It seems terribly hard but my experience after only 3 months on a rollercoaster is that playing the what if game never helps!

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