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liver mets please help

Forums General Melanoma Community liver mets please help

  • Post
    Terra
    Participant

    Hi, I am sorry I haven't posted much lately, we are so busy, we have a 4 and 2 year old and one due in June (unexpectedly). 

     

    My husband Derek was diagnosed at stage 3 in 2001, recurred in 07, finished interferon and radiation in 08, lung surgeries in June 10 and January 11 – today I just found out he has multiple liver mets and microscopic disease in his original scar on his shoulder.  The onc thinks our options are ipi, IL-2, P13K and MEK (in TO), or other chemos. 

    Hi, I am sorry I haven't posted much lately, we are so busy, we have a 4 and 2 year old and one due in June (unexpectedly). 

     

    My husband Derek was diagnosed at stage 3 in 2001, recurred in 07, finished interferon and radiation in 08, lung surgeries in June 10 and January 11 – today I just found out he has multiple liver mets and microscopic disease in his original scar on his shoulder.  The onc thinks our options are ipi, IL-2, P13K and MEK (in TO), or other chemos. 

    I think surgery is out of question now, could anyone help me think – I know liver mets are bad and we have not received any news yet on his chest ct scan, I am sick about the possibility of what the holds. 

     

    please provide some advice

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  • Replies
      Fen
      Participant

      Terra – there are people on the board who have had liver mets and I'm sure they will chime in.  My gut reaction is to go for the big guns with IL-2, but does your onc have a preference?  Can you get more information through a second opinion?

      My heart goes out to you and I pray you find a path to NED.

      Fen

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      Fen
      Participant

      Terra – there are people on the board who have had liver mets and I'm sure they will chime in.  My gut reaction is to go for the big guns with IL-2, but does your onc have a preference?  Can you get more information through a second opinion?

      My heart goes out to you and I pray you find a path to NED.

      Fen

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      Lori C
      Participant

      What is his HLA status?  B-raf?  There are also ablation treatments that can be used for liver mets.  I agree that it needs to be treated with the utmost aggression.  If you are not with a doctor you trust greatly, switch to the best you can possibly find.

      I would personally try the IL2 first since it can produce a really durable response but there are aggressive chemos and some that can be used in direct high dose to the liver.   Are there people here who have done ipi with liver mets?  I am not familiar with how well it handles those.   Will's liver mets grew so fast and I deeply regret every day we wasted in terms of treatment.  I hope you can get started on treatment asap and it's with a doc that you have a high degree of confidence in.

      Wishing you the very best outcome,

      Lori

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        Terra
        Participant

        Thank-you for responding, he is braf negative, I am not sure what ablation is or that there is high dose to the liver I will need to look intot hat, if anyone know anything further please let me know thank-you

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        Terra
        Participant

        Thank-you for responding, he is braf negative, I am not sure what ablation is or that there is high dose to the liver I will need to look intot hat, if anyone know anything further please let me know thank-you

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      Lori C
      Participant

      What is his HLA status?  B-raf?  There are also ablation treatments that can be used for liver mets.  I agree that it needs to be treated with the utmost aggression.  If you are not with a doctor you trust greatly, switch to the best you can possibly find.

      I would personally try the IL2 first since it can produce a really durable response but there are aggressive chemos and some that can be used in direct high dose to the liver.   Are there people here who have done ipi with liver mets?  I am not familiar with how well it handles those.   Will's liver mets grew so fast and I deeply regret every day we wasted in terms of treatment.  I hope you can get started on treatment asap and it's with a doc that you have a high degree of confidence in.

      Wishing you the very best outcome,

      Lori

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      Terra
      Participant

      She does not have a preference, we will discuss situation with another onc next week, who i also trust and see where we go from here – I don't think either of their preferences are IL-2 just because the numbers are so low for those who respond.

      I am just so sad and so afraid I really feel just paralized tonight

      Terra 

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      Terra
      Participant

      She does not have a preference, we will discuss situation with another onc next week, who i also trust and see where we go from here – I don't think either of their preferences are IL-2 just because the numbers are so low for those who respond.

      I am just so sad and so afraid I really feel just paralized tonight

      Terra 

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      King
      Participant

      Terra,

       

      I'm so sorry to read this news.  I am a person that had liver mets (one 4.5cm lesion) but I was fortunate that mine was operable.  I've always been told that if there is more than one lesion that surgery is not an option.  I'm sure others will respond with their opinions on BRAF, Ipi, Mek, IL-2 and chemo.  This news always hits me the hardest when it involves a person with young children.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      King
      Participant

      Terra,

       

      I'm so sorry to read this news.  I am a person that had liver mets (one 4.5cm lesion) but I was fortunate that mine was operable.  I've always been told that if there is more than one lesion that surgery is not an option.  I'm sure others will respond with their opinions on BRAF, Ipi, Mek, IL-2 and chemo.  This news always hits me the hardest when it involves a person with young children.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      FormerCaregiver
      Participant

      Until very recently, there wasn't any drug available that could offer real
      hope in increasing overall survival time. I recently posted a link to an
      article that describes how an improved survival time of patients using ipi
      (ipilimumab) has just been confirmed in phase 3 clinical trial.

      Here is the link again:
      http://www.liebertonline.com/doi/abs/10.1089/cbr.2010.0865

      Perhaps it would be an idea to print this abstract and then to talk about it
      with your onc. Hope this helps.

      Frank

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        claudia-uk
        Participant

        Mu husband has several liver mets, the biggest one already 9 cm! He will start tomorrow with Ipilimumab. Because he has several liver mets no surgery or ablation can be done.

        We hope that Ipi will help in time. It is frightening how fast liver mets grow, the big one grew 3 cm in 2 months.

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        claudia-uk
        Participant

        Mu husband has several liver mets, the biggest one already 9 cm! He will start tomorrow with Ipilimumab. Because he has several liver mets no surgery or ablation can be done.

        We hope that Ipi will help in time. It is frightening how fast liver mets grow, the big one grew 3 cm in 2 months.

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      FormerCaregiver
      Participant

      Until very recently, there wasn't any drug available that could offer real
      hope in increasing overall survival time. I recently posted a link to an
      article that describes how an improved survival time of patients using ipi
      (ipilimumab) has just been confirmed in phase 3 clinical trial.

      Here is the link again:
      http://www.liebertonline.com/doi/abs/10.1089/cbr.2010.0865

      Perhaps it would be an idea to print this abstract and then to talk about it
      with your onc. Hope this helps.

      Frank

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      James from Sydney
      Participant

      Terra i am sorry to hear of the Liver involvement. You asked about Ablation this method uses Radio Frequency to destroy     small tumors i believe they can do several at a time. The other is direct delivery of chemo into the liver isolating it from the rest of the body so a higher dose can be given. The Delcath System was one of those delivery systems.mentioned at ASCO last year.

      Others have mentioned Ippi and IL2 but also ask about MEK combo Trials and last week some had mentioned a new Trial that looked promising with a drug E7080. Seek several opinions then do the one you feel is right and don't look back.

      best wishes

      James

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      James from Sydney
      Participant

      Terra i am sorry to hear of the Liver involvement. You asked about Ablation this method uses Radio Frequency to destroy     small tumors i believe they can do several at a time. The other is direct delivery of chemo into the liver isolating it from the rest of the body so a higher dose can be given. The Delcath System was one of those delivery systems.mentioned at ASCO last year.

      Others have mentioned Ippi and IL2 but also ask about MEK combo Trials and last week some had mentioned a new Trial that looked promising with a drug E7080. Seek several opinions then do the one you feel is right and don't look back.

      best wishes

      James

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