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mucosal melanoma recently met to liver

Forums Mucosal Melanoma Community mucosal melanoma recently met to liver

  • Post
    madeclaire
    Participant

      Hello everyone,  I was originally diagnosed with mucosal melanoma (nasal cavity) in 2003.  It was a non pigmented lesion that began to bleed.  I then entered a vaccine trial and remained NED for 5 years but closely followed by an excellent nead and neck surgeion and an oncologist specializing in melanoma at Northwestern Memorial in Chicago.  I had a recurrance in 2008 and again had surgery which involved a partial maxillectomy (removal of some of the palate, teeth and jaw bone)  I was only offered interferon and chose not to take it.

      Hello everyone,  I was originally diagnosed with mucosal melanoma (nasal cavity) in 2003.  It was a non pigmented lesion that began to bleed.  I then entered a vaccine trial and remained NED for 5 years but closely followed by an excellent nead and neck surgeion and an oncologist specializing in melanoma at Northwestern Memorial in Chicago.  I had a recurrance in 2008 and again had surgery which involved a partial maxillectomy (removal of some of the palate, teeth and jaw bone)  I was only offered interferon and chose not to take it.  Then I recurred again in 2011 and had more of the palat, teeth and jaw removed and received radiation.  6 weeks ago a scan can back with uptake in one neck node and several lesions in the liver.  I had tissue sent ot to be analyzed for mutations.  I waited two weeks only to be told that the results were inconclusive due to bone mixed in with soft tissue.  I decided to have the neck node removed and now await again a full molecular analysis of this tissue.  If I have either a C-Kit or Braf mutation my treatment options are clear and hopeful.  If not, my oncologist is offering me either  standard chemo, IL 2 or yervoy.  He also thought I should consider some of the trials out there.  I have been pcking through a list of more than 28 trials around the country and have narrowed it down to NIH in Bethesda which has a vaccine trial and also an IL 15 trial or the U of Chicago which is also doing a vaccine trial.  Does anyone out there have any info on better trials for someone in my situation.  As you all know when diagnosed stage IV and given less than a year to live without treatment it feels like there is a gun to your head.  I don't want to waste energy or look in too many directions at once, but I do want to make an informed decision on my next step.  I have two kids in college and would love to live to meet my grandkids.  I am also healthy and active and love life.  This board has been an inspiration to me for some time.  

    Viewing 8 reply threads
    • Replies
        JC
        Participant

          I'm also in Chicago area – just curious who your Dr is at Northwestern and if you're happy with them?

            madeclaire
            Participant

              I have been followed by Tim Kuzel for 9 years.  While I find it easy to talk to him, there have been several misteps made by his office, mainly he did not have my tissue tested and fully sequenced last October when I suggested it.  Later when I discovered after a CT scan tht the disease had metastasized to the liver he had tissue sent out but the tissue was inadequate.  That delayed me further since I had to have a surgery to remove the node and I'm still waiting to hear back on whether or not I have mutations and which treatment path I should take.  Dr. Kuzel's main interest I think is kidney cancer and since the stakes are high, I decided to consult with U of C dr. Tom Gajewski who deals only with melanoma.  Good luck

               

              Madeline

              madeclaire
              Participant

                I have been followed by Tim Kuzel for 9 years.  While I find it easy to talk to him, there have been several misteps made by his office, mainly he did not have my tissue tested and fully sequenced last October when I suggested it.  Later when I discovered after a CT scan tht the disease had metastasized to the liver he had tissue sent out but the tissue was inadequate.  That delayed me further since I had to have a surgery to remove the node and I'm still waiting to hear back on whether or not I have mutations and which treatment path I should take.  Dr. Kuzel's main interest I think is kidney cancer and since the stakes are high, I decided to consult with U of C dr. Tom Gajewski who deals only with melanoma.  Good luck

                 

                Madeline

                madeclaire
                Participant

                  I have been followed by Tim Kuzel for 9 years.  While I find it easy to talk to him, there have been several misteps made by his office, mainly he did not have my tissue tested and fully sequenced last October when I suggested it.  Later when I discovered after a CT scan tht the disease had metastasized to the liver he had tissue sent out but the tissue was inadequate.  That delayed me further since I had to have a surgery to remove the node and I'm still waiting to hear back on whether or not I have mutations and which treatment path I should take.  Dr. Kuzel's main interest I think is kidney cancer and since the stakes are high, I decided to consult with U of C dr. Tom Gajewski who deals only with melanoma.  Good luck

                   

                  Madeline

                JC
                Participant

                  I'm also in Chicago area – just curious who your Dr is at Northwestern and if you're happy with them?

                  JC
                  Participant

                    I'm also in Chicago area – just curious who your Dr is at Northwestern and if you're happy with them?

                    s Mom
                    Participant

                      My son has Stage 4 melanoma with mets to liver, and we are in Chicago, too.  Please check out Susan Steel and the Skin of Steel website.  Call her – she is very very informative and will help point you in the right direction as far as the best trials out there.  It's good to know you are getting your tumors tested for specific mutations – that will help with treatment options.  Praying for you and God Bless…keep us informed.

                      Jeff's Mom (Bridgette)

                        madeclaire
                        Participant

                          Thank you Bridgette, for your comment.  My dermatologist Pedram Gerami at NWM told me about Susan as well.  She is an amazing person and advocate for all of us.  I did get to talk to her and hope to meet her soon.  Best of luck to your son, Jeff.  My prayers are with you both also

                           

                          Madeline

                          madeclaire
                          Participant

                            Thank you Bridgette, for your comment.  My dermatologist Pedram Gerami at NWM told me about Susan as well.  She is an amazing person and advocate for all of us.  I did get to talk to her and hope to meet her soon.  Best of luck to your son, Jeff.  My prayers are with you both also

                             

                            Madeline

                            madeclaire
                            Participant

                              Thank you Bridgette, for your comment.  My dermatologist Pedram Gerami at NWM told me about Susan as well.  She is an amazing person and advocate for all of us.  I did get to talk to her and hope to meet her soon.  Best of luck to your son, Jeff.  My prayers are with you both also

                               

                              Madeline

                            s Mom
                            Participant

                              My son has Stage 4 melanoma with mets to liver, and we are in Chicago, too.  Please check out Susan Steel and the Skin of Steel website.  Call her – she is very very informative and will help point you in the right direction as far as the best trials out there.  It's good to know you are getting your tumors tested for specific mutations – that will help with treatment options.  Praying for you and God Bless…keep us informed.

                              Jeff's Mom (Bridgette)

                              s Mom
                              Participant

                                My son has Stage 4 melanoma with mets to liver, and we are in Chicago, too.  Please check out Susan Steel and the Skin of Steel website.  Call her – she is very very informative and will help point you in the right direction as far as the best trials out there.  It's good to know you are getting your tumors tested for specific mutations – that will help with treatment options.  Praying for you and God Bless…keep us informed.

                                Jeff's Mom (Bridgette)

                                Charlie S
                                Participant

                                  I am not a doctor, but have been through a few melanoma rodeos. and In sorting through your post,  you have many if's, that are going unanswered   So this is my observation and some suggestions for thought……………….take it as you will.

                                  1) Work the problem

                                  2) You do not know if you have the c-kit mutation,  It is not uncommon for those diagnosed with mucosal melanoma to have this mutation, Maybe you do, maybe you do not, but  get the c-kit mutation test to find out.

                                  3) You do not know if you have the BRAF mutation,.  It is not uncommon for ANY melanoma patient to have this mutation. Maybe you do , maybe you do not, but get the BRAF mutation test to find out.

                                  4) Once you know the answer to c-kit, that will either rule in or out Gleevec as an option.

                                  5) Once you know the answer to BRAF, that will either rule in or out Zelboraf as an option.

                                  6) Gleevec is FDA approved for those with the c-kit mutation rx melanoma

                                  7) Zelboraf is FDA approved for those with the BRAF mutation rx melanoma

                                  8) Should you have both, ask about combining them, at what time interval and in what order.

                                  9) Should you NOT have either, explore IL2.  It is approved for those with a rx of advanced melanoma.

                                  10) After working the problem, and you find that none of this applies to you or appeals to you, then by all means explore clinical trials; but honestly, WORK THE PROBLEM as described and try not to jump off the bridge without a rope to clinical trials until you are certain that nothing else offers you a bungee cord.

                                  Cheers,

                                  Charlie S 

                                    madeclaire
                                    Participant

                                      Hi Charlie,

                                       

                                      Thank you for your post.  I am still waiting for definitive answer to the tissue testing which had to be redone.  The first time there was inadequate tissue for a good result.  I do know now that I do  not have the braf mutation and am still hoping for the C Kit.  I am not to hopeful for this and that's wy I'm looking for other best options.  I am looking for a anti pdi trial in the area. I would also be willing to travel to LA or the the East coast where I have family.  My at home options at this point are Yervoy/ipi  or IL 2, or an IL 12 trial at U of C.  I understand that there may be anti pd trials here soon some of which require that the patient has already tried Yervoy and others that require the patient to be ipi naive.

                                       

                                      trying not to jump off the bridge

                                       

                                      Madeline

                                      madeclaire
                                      Participant

                                        Hi Charlie,

                                         

                                        Thank you for your post.  I am still waiting for definitive answer to the tissue testing which had to be redone.  The first time there was inadequate tissue for a good result.  I do know now that I do  not have the braf mutation and am still hoping for the C Kit.  I am not to hopeful for this and that's wy I'm looking for other best options.  I am looking for a anti pdi trial in the area. I would also be willing to travel to LA or the the East coast where I have family.  My at home options at this point are Yervoy/ipi  or IL 2, or an IL 12 trial at U of C.  I understand that there may be anti pd trials here soon some of which require that the patient has already tried Yervoy and others that require the patient to be ipi naive.

                                         

                                        trying not to jump off the bridge

                                         

                                        Madeline

                                        madeclaire
                                        Participant

                                          Hi Charlie,

                                           

                                          Thank you for your post.  I am still waiting for definitive answer to the tissue testing which had to be redone.  The first time there was inadequate tissue for a good result.  I do know now that I do  not have the braf mutation and am still hoping for the C Kit.  I am not to hopeful for this and that's wy I'm looking for other best options.  I am looking for a anti pdi trial in the area. I would also be willing to travel to LA or the the East coast where I have family.  My at home options at this point are Yervoy/ipi  or IL 2, or an IL 12 trial at U of C.  I understand that there may be anti pd trials here soon some of which require that the patient has already tried Yervoy and others that require the patient to be ipi naive.

                                           

                                          trying not to jump off the bridge

                                           

                                          Madeline

                                        Charlie S
                                        Participant

                                          I am not a doctor, but have been through a few melanoma rodeos. and In sorting through your post,  you have many if's, that are going unanswered   So this is my observation and some suggestions for thought……………….take it as you will.

                                          1) Work the problem

                                          2) You do not know if you have the c-kit mutation,  It is not uncommon for those diagnosed with mucosal melanoma to have this mutation, Maybe you do, maybe you do not, but  get the c-kit mutation test to find out.

                                          3) You do not know if you have the BRAF mutation,.  It is not uncommon for ANY melanoma patient to have this mutation. Maybe you do , maybe you do not, but get the BRAF mutation test to find out.

                                          4) Once you know the answer to c-kit, that will either rule in or out Gleevec as an option.

                                          5) Once you know the answer to BRAF, that will either rule in or out Zelboraf as an option.

                                          6) Gleevec is FDA approved for those with the c-kit mutation rx melanoma

                                          7) Zelboraf is FDA approved for those with the BRAF mutation rx melanoma

                                          8) Should you have both, ask about combining them, at what time interval and in what order.

                                          9) Should you NOT have either, explore IL2.  It is approved for those with a rx of advanced melanoma.

                                          10) After working the problem, and you find that none of this applies to you or appeals to you, then by all means explore clinical trials; but honestly, WORK THE PROBLEM as described and try not to jump off the bridge without a rope to clinical trials until you are certain that nothing else offers you a bungee cord.

                                          Cheers,

                                          Charlie S 

                                          Charlie S
                                          Participant

                                            I am not a doctor, but have been through a few melanoma rodeos. and In sorting through your post,  you have many if's, that are going unanswered   So this is my observation and some suggestions for thought……………….take it as you will.

                                            1) Work the problem

                                            2) You do not know if you have the c-kit mutation,  It is not uncommon for those diagnosed with mucosal melanoma to have this mutation, Maybe you do, maybe you do not, but  get the c-kit mutation test to find out.

                                            3) You do not know if you have the BRAF mutation,.  It is not uncommon for ANY melanoma patient to have this mutation. Maybe you do , maybe you do not, but get the BRAF mutation test to find out.

                                            4) Once you know the answer to c-kit, that will either rule in or out Gleevec as an option.

                                            5) Once you know the answer to BRAF, that will either rule in or out Zelboraf as an option.

                                            6) Gleevec is FDA approved for those with the c-kit mutation rx melanoma

                                            7) Zelboraf is FDA approved for those with the BRAF mutation rx melanoma

                                            8) Should you have both, ask about combining them, at what time interval and in what order.

                                            9) Should you NOT have either, explore IL2.  It is approved for those with a rx of advanced melanoma.

                                            10) After working the problem, and you find that none of this applies to you or appeals to you, then by all means explore clinical trials; but honestly, WORK THE PROBLEM as described and try not to jump off the bridge without a rope to clinical trials until you are certain that nothing else offers you a bungee cord.

                                            Cheers,

                                            Charlie S 

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