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Second infusion of Pd1

Forums General Melanoma Community Second infusion of Pd1

  • Post
    Amanda
    Participant

      My boyfriend Randy got his second infusion of the merk-3475 pd-1 drug at 10mg/kg with previous use of Yervoy at UCLA with Dr. Ribas monday, and also had a visit with his primary oncologist, Dr. T. wednesday who was very happy with him at this time.  Dr.T measured his palpable mets and said they were stabalized.  He also said that it was the best he has seen him since he's become his Dr. (when randy was discharged from the hospital after his bowel surgery, we switched from his previous oncologist to Dr. T who knows more about melanoma.

      My boyfriend Randy got his second infusion of the merk-3475 pd-1 drug at 10mg/kg with previous use of Yervoy at UCLA with Dr. Ribas monday, and also had a visit with his primary oncologist, Dr. T. wednesday who was very happy with him at this time.  Dr.T measured his palpable mets and said they were stabalized.  He also said that it was the best he has seen him since he's become his Dr. (when randy was discharged from the hospital after his bowel surgery, we switched from his previous oncologist to Dr. T who knows more about melanoma. Randy was in a very weak state, and had lost a lot of weight when we met with Dr. T for the first time.  Randys tumors were growing quite rapidly for the two months before he started pd-1, including a met under his jaw bone that is about an inch long (forgot to ask the measurements) that devolped to that size in two months.  That met was the fastest growing met he has had yet i believe. 

      I had been trying to get randy into the Pd-1 trial at UCLA for a month or more, waiting for the slots to open for previous ipi use.  All the while Dr. T saying we should start Dacarbazine since his mets were growing (he's braf-).  I knew from this board, and other research that Anti-Pd1 was doing so well in patient trials, i had to get randy into one.  We kept telling the Dr. we were trying to get into this trial, and luckily enough got accepted to one at UCLA.  Dr. T said randy had a good nurse (me).  ha, made me feel good.  Sorry to go on, but so far his visible mets have stabalized, pretty much right after the first dose we noticed them stop growing.  He has gained some weight, appetite is up, energy is definately up since he started, i can really tell the difference.  Plus he says he feels 'great'.  so far only some mild joint and muscle pains. 

      Does anyone know how long ipi stays in the body?  After 7 months could ipi still be in there, and be working with the pd-1?

      !-Amanda-!
      (g/f of patient Randy)

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    • Replies
        POW
        Participant

          Amanda, this is incredible news! You have done a heck of a job researching Randy's treatment options, making all the arrangements, and hanging tough holding out for the best possible treatment. My hat is off to you. Randy is a very lucky man!

          From what I have read (including the link you posted to a research report) Yervoy can continue to exert its effect for many months and even years. I have also read that prior treatment with Yervoy can increase the effectiveness of anti-PD-1– sort of like a one-two punch from the immune system. Unfortunately, as with everything else about this disease, there are no guarantees. Every patient is different. But it sounds like you have done everything humanly possible and that Randy is in a very good place right now. Try your best to relax, be optimistic, and let the anti-PD1 do it's job. Meanwhile, have as much fun in life as you possibly can.

            Amanda
            Participant

              wow, thank you so much for the kind reply!  I really have done and continue to do all i can to save the love of my life.  I'm just so grateful i found this message board, and all the awesome people who post here.  We give each other so much knowledge, and hope.  Although i am not the patient, i feel for all the patients and family just as i do my boyfriend.  Lets all hope and pray Pd-1 will be available to everyone soon!! 

              Amanda
              Participant

                wow, thank you so much for the kind reply!  I really have done and continue to do all i can to save the love of my life.  I'm just so grateful i found this message board, and all the awesome people who post here.  We give each other so much knowledge, and hope.  Although i am not the patient, i feel for all the patients and family just as i do my boyfriend.  Lets all hope and pray Pd-1 will be available to everyone soon!! 

                Amanda
                Participant

                  wow, thank you so much for the kind reply!  I really have done and continue to do all i can to save the love of my life.  I'm just so grateful i found this message board, and all the awesome people who post here.  We give each other so much knowledge, and hope.  Although i am not the patient, i feel for all the patients and family just as i do my boyfriend.  Lets all hope and pray Pd-1 will be available to everyone soon!! 

                POW
                Participant

                  Amanda, this is incredible news! You have done a heck of a job researching Randy's treatment options, making all the arrangements, and hanging tough holding out for the best possible treatment. My hat is off to you. Randy is a very lucky man!

                  From what I have read (including the link you posted to a research report) Yervoy can continue to exert its effect for many months and even years. I have also read that prior treatment with Yervoy can increase the effectiveness of anti-PD-1– sort of like a one-two punch from the immune system. Unfortunately, as with everything else about this disease, there are no guarantees. Every patient is different. But it sounds like you have done everything humanly possible and that Randy is in a very good place right now. Try your best to relax, be optimistic, and let the anti-PD1 do it's job. Meanwhile, have as much fun in life as you possibly can.

                  POW
                  Participant

                    Amanda, this is incredible news! You have done a heck of a job researching Randy's treatment options, making all the arrangements, and hanging tough holding out for the best possible treatment. My hat is off to you. Randy is a very lucky man!

                    From what I have read (including the link you posted to a research report) Yervoy can continue to exert its effect for many months and even years. I have also read that prior treatment with Yervoy can increase the effectiveness of anti-PD-1– sort of like a one-two punch from the immune system. Unfortunately, as with everything else about this disease, there are no guarantees. Every patient is different. But it sounds like you have done everything humanly possible and that Randy is in a very good place right now. Try your best to relax, be optimistic, and let the anti-PD1 do it's job. Meanwhile, have as much fun in life as you possibly can.

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