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help needed

› Forums › General Melanoma Community › help needed

  • Post
    • January 13, 2016 at 11:04 pm
    gcooperbl
    Participant

    my dad has stage 4 melanoma in brain lungs and liver……he has been offered pembro but only one dose? we cant understand why as it is supposed to take 3-4 doses min? 

    he is braf negative 

    his cancer in liver is getting worse and needs treated asap, he is due to start pembro next week, and he is on steroids though coming off them.

    any advice? he needs the best treatment? any other drugs out there that could help? or any more tests we could do?

     

Viewing 8 reply threads
  • Replies
      • January 14, 2016 at 6:19 pm
      Scooby123
      Participant

      Hi gcooperl

       

      So sorry th hear your dad is dealing with this disease. I have not taken pembro but have had ippi. Not sure why your dad has been offered only one dose of treatment. How is your dad feeling in him self. There is lots of lovely people on this site with experience of taking pembro and will be able to give advice. It does not seem correct in only one dose I believe but forgive me if wrong when you on pembro it is normally taken till it does not work anymore.

      i am braf negative but just had ippi treatment at present I have liver , lungs and other areas of disease. 

      All the best here if you need anymore help 

      scooby❤️

      • January 14, 2016 at 6:19 pm
      Scooby123
      Participant

      Hi gcooperl

       

      So sorry th hear your dad is dealing with this disease. I have not taken pembro but have had ippi. Not sure why your dad has been offered only one dose of treatment. How is your dad feeling in him self. There is lots of lovely people on this site with experience of taking pembro and will be able to give advice. It does not seem correct in only one dose I believe but forgive me if wrong when you on pembro it is normally taken till it does not work anymore.

      i am braf negative but just had ippi treatment at present I have liver , lungs and other areas of disease. 

      All the best here if you need anymore help 

      scooby❤️

      • January 14, 2016 at 6:19 pm
      Scooby123
      Participant

      Hi gcooperl

       

      So sorry th hear your dad is dealing with this disease. I have not taken pembro but have had ippi. Not sure why your dad has been offered only one dose of treatment. How is your dad feeling in him self. There is lots of lovely people on this site with experience of taking pembro and will be able to give advice. It does not seem correct in only one dose I believe but forgive me if wrong when you on pembro it is normally taken till it does not work anymore.

      i am braf negative but just had ippi treatment at present I have liver , lungs and other areas of disease. 

      All the best here if you need anymore help 

      scooby❤️

      • January 15, 2016 at 4:24 pm
      JuTMSY4
      Participant

      Hi

      I took ipi and then pembro (back when pembro was just approved, but you had to fail ipi first).  Are you located in the US.  If you're not, I am not familiar with the guidelines, etc.  

      If you are, are you sure its one dose?  Pembro is given once every 3 weeks or so, I believe (that's my course).  It also may have immediate results (some respond very quick) and it can also cause immediate/severe side effects.  On the other end of the spectrum, it can have mild to no side effects and take several doses/time to show any results.  In between can be growth, stability, reduction and then growth and/or growth/inflammation and reduction after.  

      I would confirm that course of treatment first and perhaps you are misreading 1 "dose" as one 3 month course (or similar).  Also, there are clinical trials in the US combining Pembro and/or Nivo with other drugs including Ipi (the Nivo/ipi combo being the most prevelant).  You could investigate those.  

      Good luck – it's a tough road, but hang in there.  

      -Justin

      • January 15, 2016 at 4:24 pm
      JuTMSY4
      Participant

      Hi

      I took ipi and then pembro (back when pembro was just approved, but you had to fail ipi first).  Are you located in the US.  If you're not, I am not familiar with the guidelines, etc.  

      If you are, are you sure its one dose?  Pembro is given once every 3 weeks or so, I believe (that's my course).  It also may have immediate results (some respond very quick) and it can also cause immediate/severe side effects.  On the other end of the spectrum, it can have mild to no side effects and take several doses/time to show any results.  In between can be growth, stability, reduction and then growth and/or growth/inflammation and reduction after.  

      I would confirm that course of treatment first and perhaps you are misreading 1 "dose" as one 3 month course (or similar).  Also, there are clinical trials in the US combining Pembro and/or Nivo with other drugs including Ipi (the Nivo/ipi combo being the most prevelant).  You could investigate those.  

      Good luck – it's a tough road, but hang in there.  

      -Justin

        • January 15, 2016 at 4:26 pm
        JuTMSY4
        Participant

        I should add that side effects =/= results.  You can have mild side effects with great results or terrible side effects with limited results/growth and the time to show results, if any, can be quick or slow.  All those issues run on their own and seemingly independently (there may be links, no one is sure).  My point is, do not read into it.

        Also, does your father have other medical conditions which may be a concern?  That may be the reason for trepidation in use of Pembro – I don't know the answer this is.  

        • January 15, 2016 at 4:26 pm
        JuTMSY4
        Participant

        I should add that side effects =/= results.  You can have mild side effects with great results or terrible side effects with limited results/growth and the time to show results, if any, can be quick or slow.  All those issues run on their own and seemingly independently (there may be links, no one is sure).  My point is, do not read into it.

        Also, does your father have other medical conditions which may be a concern?  That may be the reason for trepidation in use of Pembro – I don't know the answer this is.  

        • January 17, 2016 at 4:27 pm
        Sheryljane
        Participant

        I just had my fourth keytruda infusion

        will be having a scan in two weeks

        obvious tumors have been shrinking

        optomistic that lung spleen etc will be effected in the same way

        please pray

        think they generally expect results after 4 treatments

        • January 17, 2016 at 4:27 pm
        Sheryljane
        Participant

        I just had my fourth keytruda infusion

        will be having a scan in two weeks

        obvious tumors have been shrinking

        optomistic that lung spleen etc will be effected in the same way

        please pray

        think they generally expect results after 4 treatments

        • January 17, 2016 at 4:27 pm
        Sheryljane
        Participant

        I just had my fourth keytruda infusion

        will be having a scan in two weeks

        obvious tumors have been shrinking

        optomistic that lung spleen etc will be effected in the same way

        please pray

        think they generally expect results after 4 treatments

        • January 15, 2016 at 4:26 pm
        JuTMSY4
        Participant

        I should add that side effects =/= results.  You can have mild side effects with great results or terrible side effects with limited results/growth and the time to show results, if any, can be quick or slow.  All those issues run on their own and seemingly independently (there may be links, no one is sure).  My point is, do not read into it.

        Also, does your father have other medical conditions which may be a concern?  That may be the reason for trepidation in use of Pembro – I don't know the answer this is.  

      • January 15, 2016 at 4:24 pm
      JuTMSY4
      Participant

      Hi

      I took ipi and then pembro (back when pembro was just approved, but you had to fail ipi first).  Are you located in the US.  If you're not, I am not familiar with the guidelines, etc.  

      If you are, are you sure its one dose?  Pembro is given once every 3 weeks or so, I believe (that's my course).  It also may have immediate results (some respond very quick) and it can also cause immediate/severe side effects.  On the other end of the spectrum, it can have mild to no side effects and take several doses/time to show any results.  In between can be growth, stability, reduction and then growth and/or growth/inflammation and reduction after.  

      I would confirm that course of treatment first and perhaps you are misreading 1 "dose" as one 3 month course (or similar).  Also, there are clinical trials in the US combining Pembro and/or Nivo with other drugs including Ipi (the Nivo/ipi combo being the most prevelant).  You could investigate those.  

      Good luck – it's a tough road, but hang in there.  

      -Justin

      • January 17, 2016 at 9:55 pm
      kylez
      Participant

      There are some PD1 and PD1/IPI clinical trials that are specifically for people with brain mets. And a few other drugs as well. I know that with any clincial trial, location may be an issue, and the exclusion criteria can sometimes be difficult. 

      Try this search on clinicaltrials.gov, disease = melanoma, country = USA (if you're US-based), search word = brain, open studies. That search embedded in a link is, https://clinicaltrials.gov/ct2/results?term=brain&recr=Open&rslt=&type=&cond=melanoma&intr=&titles=&outc=&spons=&lead=&id=&state1=&cntry1=NA%3AUS&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

      – Kyle

      • January 17, 2016 at 9:55 pm
      kylez
      Participant

      There are some PD1 and PD1/IPI clinical trials that are specifically for people with brain mets. And a few other drugs as well. I know that with any clincial trial, location may be an issue, and the exclusion criteria can sometimes be difficult. 

      Try this search on clinicaltrials.gov, disease = melanoma, country = USA (if you're US-based), search word = brain, open studies. That search embedded in a link is, https://clinicaltrials.gov/ct2/results?term=brain&recr=Open&rslt=&type=&cond=melanoma&intr=&titles=&outc=&spons=&lead=&id=&state1=&cntry1=NA%3AUS&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

      – Kyle

        • January 30, 2016 at 10:56 pm
        gcooperbl
        Participant

        Thanks all

        luckily we got it wrong….blood y doctors – it's one dose which is three cycles per dose….didn't explain it well to us. He has had his first cycle and no side effects which is good!

         

        he gets next cycle in a few weeks…just hope it works 

         

        fingers crossed

         

         

        • January 30, 2016 at 10:56 pm
        gcooperbl
        Participant

        Thanks all

        luckily we got it wrong….blood y doctors – it's one dose which is three cycles per dose….didn't explain it well to us. He has had his first cycle and no side effects which is good!

         

        he gets next cycle in a few weeks…just hope it works 

         

        fingers crossed

         

         

        • January 30, 2016 at 10:56 pm
        gcooperbl
        Participant

        Thanks all

        luckily we got it wrong….blood y doctors – it's one dose which is three cycles per dose….didn't explain it well to us. He has had his first cycle and no side effects which is good!

         

        he gets next cycle in a few weeks…just hope it works 

         

        fingers crossed

         

         

      • January 17, 2016 at 9:55 pm
      kylez
      Participant

      There are some PD1 and PD1/IPI clinical trials that are specifically for people with brain mets. And a few other drugs as well. I know that with any clincial trial, location may be an issue, and the exclusion criteria can sometimes be difficult. 

      Try this search on clinicaltrials.gov, disease = melanoma, country = USA (if you're US-based), search word = brain, open studies. That search embedded in a link is, https://clinicaltrials.gov/ct2/results?term=brain&recr=Open&rslt=&type=&cond=melanoma&intr=&titles=&outc=&spons=&lead=&id=&state1=&cntry1=NA%3AUS&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

      – Kyle

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