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HELP- ipi vs. E-7080 clinical trial? Liver Mets.

Forums General Melanoma Community HELP- ipi vs. E-7080 clinical trial? Liver Mets.

  • Post
    Netlla
    Participant

    Has anyone who has had melanoma of the liver opted for the ipi or E-7080 clinical trial? My step-father has BRAF-Negative, wild-gene mutation melanoma in the liver, lung and lymph.  He has failed the clinical trial of the Abraxane drug. He is currently approved for the ipi treatment and it is to begin this Friday. I have heard some negative things about this drug. I know the E-7080 seems to be newer and is approved for BRAF-Negative melanoma. Does anyone out there recommend one over the other?

    Has anyone who has had melanoma of the liver opted for the ipi or E-7080 clinical trial? My step-father has BRAF-Negative, wild-gene mutation melanoma in the liver, lung and lymph.  He has failed the clinical trial of the Abraxane drug. He is currently approved for the ipi treatment and it is to begin this Friday. I have heard some negative things about this drug. I know the E-7080 seems to be newer and is approved for BRAF-Negative melanoma. Does anyone out there recommend one over the other? I just feel like one of the two are his last option, he is getting very sick, and I just don't want to make the wrong decision on treatment. Please help! 

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  • Replies
      MichaelFL
      Participant

      If you go back about 6 pages, you will see a post by someone called "vickirs" who is on E7080. It is dated 3/3/11, and the last comment on 3/22/11. There is a response from someone named Elizabeth Peters whose hunband is on this drug for brain cancer as well. Other than that, I do not believe anyone else here is currently on this trial/drug but you can also do a search as well.

      Perhaps you can contact one or both of them.

      Good luck,

      Michael

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        Netlla
        Participant

        Thank you SO much, Michael that really was helpful!! 

        Best regards, 

        Netlla 

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        Netlla
        Participant

        Thank you SO much, Michael that really was helpful!! 

        Best regards, 

        Netlla 

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      MichaelFL
      Participant

      If you go back about 6 pages, you will see a post by someone called "vickirs" who is on E7080. It is dated 3/3/11, and the last comment on 3/22/11. There is a response from someone named Elizabeth Peters whose hunband is on this drug for brain cancer as well. Other than that, I do not believe anyone else here is currently on this trial/drug but you can also do a search as well.

      Perhaps you can contact one or both of them.

      Good luck,

      Michael

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      vickirs
      Participant

      I am on E7080 and I have responded quickly to it.  I know there are several others at my clinic that are having the same results.  I noticed a change in my liver first.  I no longer prodtrudes out of my side.  I started E7080 after failing ipi and was very close to calling hospice in.  I was pratically wheel chair bound and hadn't been out of my house for 2 months before starting the drug.  Good luck on your choice and whatever drug you choose do not regret your decision.

       

      Vicki

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        Netlla
        Participant

        I'm so glad you're responding to something! I really appreciate the time you took to write this. You said you were almost wheel-chair bound? That is exactly how Doug is, but his oncology nurse is saying they won't aprove him for the trial if he isn't in a pretty healthy-looking state. Is this true?? 

         

        Thanks again, 

        Netlla 

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        vickirs
        Participant

        I never heard that you had to look healthy to be on the trial.  I know i looked like shit.  When I started to trial i was….

        in bed 75% of the day – now it is about 40 %  the medicine really does make you tired

        on morphine, dialated, oxy – now i only take oxy

        unable to cook or clean house   –  now i piddle around some but still have help

        unable to stand straight up for more than just a few minutes  had to be hunched over – does not effect me anymore

        had my liver buldging out of my side  – still rigid but does not buldge at all

        could not take shower without sitting down on stool  – no longer true

        So, you see I was really in pretty bad shape.  I am on my 2nd month, 3rd week of e7080 and get scans on 8th and results on 13th.

        Good Luck with your decision

        Vicki

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        Netlla
        Participant

        You're doing amazing! That is all just AMAZING! This is so good…. It is really comforting that I found someone that could relate to Doug and I'm so glad I have you to ask all these questions! THANK YOU SO VERY MUCH! 

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        Netlla
        Participant

        You're doing amazing! That is all just AMAZING! This is so good…. It is really comforting that I found someone that could relate to Doug and I'm so glad I have you to ask all these questions! THANK YOU SO VERY MUCH! 

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        mayeast
        Participant

        How did your scans turn out?

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        mayeast
        Participant

        How did your scans turn out?

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        vickirs
        Participant

        I never heard that you had to look healthy to be on the trial.  I know i looked like shit.  When I started to trial i was….

        in bed 75% of the day – now it is about 40 %  the medicine really does make you tired

        on morphine, dialated, oxy – now i only take oxy

        unable to cook or clean house   –  now i piddle around some but still have help

        unable to stand straight up for more than just a few minutes  had to be hunched over – does not effect me anymore

        had my liver buldging out of my side  – still rigid but does not buldge at all

        could not take shower without sitting down on stool  – no longer true

        So, you see I was really in pretty bad shape.  I am on my 2nd month, 3rd week of e7080 and get scans on 8th and results on 13th.

        Good Luck with your decision

        Vicki

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        Netlla
        Participant

        I'm so glad you're responding to something! I really appreciate the time you took to write this. You said you were almost wheel-chair bound? That is exactly how Doug is, but his oncology nurse is saying they won't aprove him for the trial if he isn't in a pretty healthy-looking state. Is this true?? 

         

        Thanks again, 

        Netlla 

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        Netlla
        Participant

        What clinic do you use and do you think he should come there to try to get on the E-7080 trial? Do you think he would have better luck of being approved? Thanks so much for your help. His Drs are wanting him to start the ipi tomorrow, and I know if he does that he won't be a canidate anymore, so I'm trying to figure everything out for him! Thanks again! 

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        Netlla
        Participant

        What clinic do you use and do you think he should come there to try to get on the E-7080 trial? Do you think he would have better luck of being approved? Thanks so much for your help. His Drs are wanting him to start the ipi tomorrow, and I know if he does that he won't be a canidate anymore, so I'm trying to figure everything out for him! Thanks again! 

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        Netlla
        Participant

        What clinic do you use and do you think he should come there to try to get on the E-7080 trial? Do you think he would have better luck of being approved? Thanks so much for your help. His Drs are wanting him to start the ipi tomorrow, and I know if he does that he won't be a canidate anymore, so I'm trying to figure everything out for him! Thanks again! 

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        vickirs
        Participant

        I go to University of Denver and my doc is Dr. Gonzalez.  Did you start ipi today?

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        Netlla
        Participant

        Dear Vickie, 

        He did not start ipi on Friday. The doctor told him he was too weak to start this. So, they admitted him and he had IV fluids and an IV antibiotic ran in order to try to get him stronger. My honest opinion is that his current doctor will not do any treatment for him, which is very sad. He told Doug that he probably had two weeks left and this was very hard for Doug to hear, of course. However, my step-dad is a fighter and he informed his Dr. that he was not giving up just yet. 

        Your story was very inspirational to me, because it reminded me a lot of the current state my step-father is in. At this point, we would go anywhere to get him the treatment with the E-7080. No one is returning my phone call from the Esia company, though. I've even left two messages with the supervisor of the company.  Do you think I could call your physician and see if Doug sounds like he could get started on this drug?  We would fly him to Denver if we had to. Would it be too much to ask to get Dr. Gonzalez's contact information? 

        Thanks again you have been more help than you'll ever know! 

        -Netlla 

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        Netlla
        Participant

        Dear Vickie, 

        He did not start ipi on Friday. The doctor told him he was too weak to start this. So, they admitted him and he had IV fluids and an IV antibiotic ran in order to try to get him stronger. My honest opinion is that his current doctor will not do any treatment for him, which is very sad. He told Doug that he probably had two weeks left and this was very hard for Doug to hear, of course. However, my step-dad is a fighter and he informed his Dr. that he was not giving up just yet. 

        Your story was very inspirational to me, because it reminded me a lot of the current state my step-father is in. At this point, we would go anywhere to get him the treatment with the E-7080. No one is returning my phone call from the Esia company, though. I've even left two messages with the supervisor of the company.  Do you think I could call your physician and see if Doug sounds like he could get started on this drug?  We would fly him to Denver if we had to. Would it be too much to ask to get Dr. Gonzalez's contact information? 

        Thanks again you have been more help than you'll ever know! 

        -Netlla 

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        vickirs
        Participant

        I go to University of Denver and my doc is Dr. Gonzalez.  Did you start ipi today?

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        Netlla
        Participant

        What clinic do you use and do you think he should come there to try to get on the E-7080 trial? Do you think he would have better luck of being approved? Thanks so much for your help. His Drs are wanting him to start the ipi tomorrow, and I know if he does that he won't be a canidate anymore, so I'm trying to figure everything out for him! Thanks again! 

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      vickirs
      Participant

      I am on E7080 and I have responded quickly to it.  I know there are several others at my clinic that are having the same results.  I noticed a change in my liver first.  I no longer prodtrudes out of my side.  I started E7080 after failing ipi and was very close to calling hospice in.  I was pratically wheel chair bound and hadn't been out of my house for 2 months before starting the drug.  Good luck on your choice and whatever drug you choose do not regret your decision.

       

      Vicki

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      Gene_S
      Participant

      Hello, You may want to research the huge side effects of ippi. You have stated that he is "very sick",

      possibly the side effect would be too harsh on him? The reason that ippi was delayed in FDA approval was to make sure a checklist/warning was provided to the doctors and care takers about what to watch for when ippi was used. There is a drug  PLX4032 that may be helpful at his stage. This is only a SUGGESTION, do your homework to see if this will work for you.

      Best wishes,

      Gene

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        Netlla
        Participant

        Dear Gene, 

        The Doctor is saying that the ipi doesn't have that many side effects, but I have read that it causes fatique and loss of appetite. I would prefer him to take the E-7080, as I am hearing good things about this drug. 

         

        He is not a candidate for the PLX4032, since he is BRAF-negative. I already tried that path as well. Thank you for your kind words and suggestion. I take them very seriously! 

         

        Best regards, 

        Netlla

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        Gene_S
        Participant

        Hello Netlla,

        I am not fimilar with E-7080 at all,sorry!  I am stage IV (liver mets) and started ippi recently.

        I am doing great after the second treatment. My oncologist is featured in this video

        http://www.youtube.com/watch?v=0Q6kkQJGeT8

        He mentions about the hard side effects of ippi towards the end of the video.

        In my case he has given me his cell phone number with specific instructions to call him

        at any time if any side effects arise.

        Wishing you the best with your choice of treatments. 

        Gene

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        Netlla
        Participant

        Thank you so much, Gene. It was great to hear that someone is having success with the ippi. Doug was unable to start this form of treatment though afterall. The doctor told him he was too weak to start this treatment and gave him 2 weeks. It's very discouraging. My step-father told him that he was not going to give up just yet, so we are still in search of something for him. He has been in the hospital since Friday. It looked like he was doing better yesterday, but today his vitals were all very low and he is having shortness of breath, so I know his physician will not go ahead and start this treatment. Thanks again for your encouraging words and the link. VERY helpful to know. 

        Thanks again, 

        Netlla 

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        Netlla
        Participant

        Thank you so much, Gene. It was great to hear that someone is having success with the ippi. Doug was unable to start this form of treatment though afterall. The doctor told him he was too weak to start this treatment and gave him 2 weeks. It's very discouraging. My step-father told him that he was not going to give up just yet, so we are still in search of something for him. He has been in the hospital since Friday. It looked like he was doing better yesterday, but today his vitals were all very low and he is having shortness of breath, so I know his physician will not go ahead and start this treatment. Thanks again for your encouraging words and the link. VERY helpful to know. 

        Thanks again, 

        Netlla 

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        Gene_S
        Participant

        Hello Netlla,

        I am not fimilar with E-7080 at all,sorry!  I am stage IV (liver mets) and started ippi recently.

        I am doing great after the second treatment. My oncologist is featured in this video

        http://www.youtube.com/watch?v=0Q6kkQJGeT8

        He mentions about the hard side effects of ippi towards the end of the video.

        In my case he has given me his cell phone number with specific instructions to call him

        at any time if any side effects arise.

        Wishing you the best with your choice of treatments. 

        Gene

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        Netlla
        Participant

        Dear Gene, 

        The Doctor is saying that the ipi doesn't have that many side effects, but I have read that it causes fatique and loss of appetite. I would prefer him to take the E-7080, as I am hearing good things about this drug. 

         

        He is not a candidate for the PLX4032, since he is BRAF-negative. I already tried that path as well. Thank you for your kind words and suggestion. I take them very seriously! 

         

        Best regards, 

        Netlla

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      Gene_S
      Participant

      Hello, You may want to research the huge side effects of ippi. You have stated that he is "very sick",

      possibly the side effect would be too harsh on him? The reason that ippi was delayed in FDA approval was to make sure a checklist/warning was provided to the doctors and care takers about what to watch for when ippi was used. There is a drug  PLX4032 that may be helpful at his stage. This is only a SUGGESTION, do your homework to see if this will work for you.

      Best wishes,

      Gene

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      FormerCaregiver
      Participant

      You mention that your step-father has liver and lung mets. My biggest concern at the moment is the condition of his liver. Has he had any liver function tests done recently? If so, what did the doctor say about his condition?

      Frank

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        Netlla
        Participant

        His liver enzymes are elevated now, they had not previously been. He has a peritoneal catheter and they drain 1,000 CC of fluid from his stomach daily. He is not doing too well as of now. His vitals are all low and he is having shortness of breath today. We're hoping he can get strong in order to pursue some form of treatment. Thanks for your concern. 

         

        -Netlla

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        Netlla
        Participant

        His liver enzymes are elevated now, they had not previously been. He has a peritoneal catheter and they drain 1,000 CC of fluid from his stomach daily. He is not doing too well as of now. His vitals are all low and he is having shortness of breath today. We're hoping he can get strong in order to pursue some form of treatment. Thanks for your concern. 

         

        -Netlla

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        FormerCaregiver
        Participant

        Unfortunately, it sounds like your step-father could be in the early stages
        of acute liver failure (see:
        http://www.mayoclinic.com/health/liver-failure/DS00961).

        My late wife had liver mets, so I have some idea of what he could be going
        through. I hope that his doctor is able to offer some advice that will be
        helpful.

        Frank

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        FormerCaregiver
        Participant

        Unfortunately, it sounds like your step-father could be in the early stages
        of acute liver failure (see:
        http://www.mayoclinic.com/health/liver-failure/DS00961).

        My late wife had liver mets, so I have some idea of what he could be going
        through. I hope that his doctor is able to offer some advice that will be
        helpful.

        Frank

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      FormerCaregiver
      Participant

      You mention that your step-father has liver and lung mets. My biggest concern at the moment is the condition of his liver. Has he had any liver function tests done recently? If so, what did the doctor say about his condition?

      Frank

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      Banu
      Participant

      Hi Nettla,

      I wanted to check with you what your father in law decided in terms of treatment and how his treatment is going. My father is 75 and a doctor at the hospital suggested that he call hospice because his prognosis is poor. She said that they should not resuscitate him, if needed, because it is better for him to die of a heart attack than endure cancer. Sometimes I feel like elderly patients don't get the same treatment and seem to be dispensable.

      I need to get my father strong and out of the hospital, so that he can qualify for some treatments. I know the odds are slim, but I don't want to give up hope.

      I hope that things worked out well for your father in law. In any case, he is very lucky to have a caring person like you in his life.

      All the best,

      Banu

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      Banu
      Participant

      Hi Nettla,

      I wanted to check with you what your father in law decided in terms of treatment and how his treatment is going. My father is 75 and a doctor at the hospital suggested that he call hospice because his prognosis is poor. She said that they should not resuscitate him, if needed, because it is better for him to die of a heart attack than endure cancer. Sometimes I feel like elderly patients don't get the same treatment and seem to be dispensable.

      I need to get my father strong and out of the hospital, so that he can qualify for some treatments. I know the odds are slim, but I don't want to give up hope.

      I hope that things worked out well for your father in law. In any case, he is very lucky to have a caring person like you in his life.

      All the best,

      Banu

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