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liver mets please help
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liver mets please help

› Forums › General Melanoma Community › liver mets please help

  • Post
    • March 10, 2011 at 12:41 am
    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

    Viewing 11 reply threads
    • Replies
        • March 10, 2011 at 1:00 am
        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

          • March 10, 2011 at 1:00 am
          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

            • March 10, 2011 at 1:55 am
            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

                • March 10, 2011 at 2:13 am
                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

                  • March 10, 2011 at 2:13 am
                  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

                  • March 10, 2011 at 1:55 am
                  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

                    • March 10, 2011 at 1:59 am
                    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 

                      • March 10, 2011 at 1:59 am
                      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 

                        • March 10, 2011 at 2:18 am
                        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

                          • March 10, 2011 at 2:18 am
                          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

                            • March 10, 2011 at 2:21 am
                            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

                                • March 10, 2011 at 8:05 am
                                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.

                                  • March 10, 2011 at 8:05 am
                                  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.

                                  • March 10, 2011 at 2:21 am
                                  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

                                    • March 10, 2011 at 10:20 am
                                    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

                                      • March 10, 2011 at 10:20 am
                                      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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