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Next Steps?

› Forums › General Melanoma Community › Next Steps?

  • Post
    • October 7, 2014 at 2:34 pm
    kentuckycat
    Participant

      Hi,

       

      I had a nodular 3.5mm primary melenoma  on leg 18 months ago with a positive lymph node and 1 local in transit met.  I was staged at 3c.  I was then on the ipi vs interferon trial and randomized into the 3mg ipi arm.  I completed ompleted the first 4 doses every 3 weeks and then 4 more doses at 3 month intervals.  This was completed in July.  I just found 3 small subq mets 2 inches from primary site.  A fine needle biopsy was done and positive for melanoma.  Ct scans were just done last week as well and all clean.  My melanoma specialist oncologist wants to do an MRI of brain and full body PET scan just to make sure no further disease.  Assuming all clear he wants to have surgery to remove the 3 mets and then interferon as an adjuvant therapy.  

      My doc says I am still stage 3c.  What other options do I have?  Can I leave the mets and do some type of systemic treatment?  Can I surgically remove the mets and then do some type of adjuvant treatment besides interferon?  Any clinical trials available that I should look into?  I have looked into some clinical trials and it seems there is one with anti-pd1 but it requires no previous use of ipi.  However in looking at some of the infromation on this site, it seems others have been stage 3 and gotten some systemic treatment.  Is IL-2 normally available for stage 3c?  Thank you in advance for any suggestions.

    Viewing 8 reply threads
    • Replies
        • October 7, 2014 at 3:44 pm
        arthurjedi007
        Participant

          Here is what it says for fda approved treatments by stage:

          http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-treating-by-stage

          Why can't you do Merck's PD1? (ie: keytruda formally known as pembroluminab). If I read this right it should be an option. Since it's FDA approved now it should require no clinical trial. You already took ipi so that requirement is done. If you are BRAF negative then that requirement is done. So then you should be able to do it.

          Here's a link to recruiting trials with pd1:

          http://www.clinicaltrials.gov/ct2/results?term=PD1&recr=Recruiting&rslt=&type=&cond=melanoma&intr=&titles=&outc=&spons=&lead=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

          I didn't go through many of them but last spring I ran into the same thing that most excluded me because I had ipi.

          However Moffit usually has a special arm of a pd1 trial for those with ipi. I believe Celeste has mentioned that before.

          Here's a link to Moffit. If you are willing and able to travel it would be worth the phone call to see what they offer.

          http://moffitt.org/for-patients-families/contact-us

          Artie

           

          • October 7, 2014 at 3:44 pm
          arthurjedi007
          Participant

            Here is what it says for fda approved treatments by stage:

            http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-treating-by-stage

            Why can't you do Merck's PD1? (ie: keytruda formally known as pembroluminab). If I read this right it should be an option. Since it's FDA approved now it should require no clinical trial. You already took ipi so that requirement is done. If you are BRAF negative then that requirement is done. So then you should be able to do it.

            Here's a link to recruiting trials with pd1:

            http://www.clinicaltrials.gov/ct2/results?term=PD1&recr=Recruiting&rslt=&type=&cond=melanoma&intr=&titles=&outc=&spons=&lead=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

            I didn't go through many of them but last spring I ran into the same thing that most excluded me because I had ipi.

            However Moffit usually has a special arm of a pd1 trial for those with ipi. I believe Celeste has mentioned that before.

            Here's a link to Moffit. If you are willing and able to travel it would be worth the phone call to see what they offer.

            http://moffitt.org/for-patients-families/contact-us

            Artie

             

              • October 7, 2014 at 5:22 pm
              kentuckycat
              Participant

                Thank you Artie.  I thought keytruda was only approved for stage IV or unresectable stage III unless a trial is available.  My in transit mets can be resected, but not sure if it makes sense to resect or not. 

                I really like your idea of contacting Moffitt.  I can and will go anywhere to try to beat this thing.  It is just tough trying to get all the latest information to try to make the best decision possible.

                Thank you again for your comments.  I really appreciate the help.

                • October 8, 2014 at 9:19 am
                Carole K
                Participant

                  If you go to Moffitt try to see Dr. Jeffrey Weber, He is wonderful

                  Hugs and positive thoguhts 

                  love adn Light

                  Carole K

                  • October 8, 2014 at 9:19 am
                  Carole K
                  Participant

                    If you go to Moffitt try to see Dr. Jeffrey Weber, He is wonderful

                    Hugs and positive thoguhts 

                    love adn Light

                    Carole K

                    • October 8, 2014 at 9:19 am
                    Carole K
                    Participant

                      If you go to Moffitt try to see Dr. Jeffrey Weber, He is wonderful

                      Hugs and positive thoguhts 

                      love adn Light

                      Carole K

                      • October 7, 2014 at 5:22 pm
                      kentuckycat
                      Participant

                        Thank you Artie.  I thought keytruda was only approved for stage IV or unresectable stage III unless a trial is available.  My in transit mets can be resected, but not sure if it makes sense to resect or not. 

                        I really like your idea of contacting Moffitt.  I can and will go anywhere to try to beat this thing.  It is just tough trying to get all the latest information to try to make the best decision possible.

                        Thank you again for your comments.  I really appreciate the help.

                        • October 7, 2014 at 5:22 pm
                        kentuckycat
                        Participant

                          Thank you Artie.  I thought keytruda was only approved for stage IV or unresectable stage III unless a trial is available.  My in transit mets can be resected, but not sure if it makes sense to resect or not. 

                          I really like your idea of contacting Moffitt.  I can and will go anywhere to try to beat this thing.  It is just tough trying to get all the latest information to try to make the best decision possible.

                          Thank you again for your comments.  I really appreciate the help.

                        • October 7, 2014 at 3:44 pm
                        arthurjedi007
                        Participant

                          Here is what it says for fda approved treatments by stage:

                          http://www.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-treating-by-stage

                          Why can't you do Merck's PD1? (ie: keytruda formally known as pembroluminab). If I read this right it should be an option. Since it's FDA approved now it should require no clinical trial. You already took ipi so that requirement is done. If you are BRAF negative then that requirement is done. So then you should be able to do it.

                          Here's a link to recruiting trials with pd1:

                          http://www.clinicaltrials.gov/ct2/results?term=PD1&recr=Recruiting&rslt=&type=&cond=melanoma&intr=&titles=&outc=&spons=&lead=&id=&state1=&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

                          I didn't go through many of them but last spring I ran into the same thing that most excluded me because I had ipi.

                          However Moffit usually has a special arm of a pd1 trial for those with ipi. I believe Celeste has mentioned that before.

                          Here's a link to Moffit. If you are willing and able to travel it would be worth the phone call to see what they offer.

                          http://moffitt.org/for-patients-families/contact-us

                          Artie

                           

                          • October 7, 2014 at 5:24 pm
                          kylez
                          Participant

                            The Keytruda prescribing info doesn't talk about staging. Instead it says it is for disease that "…has spread or cannot be removed by surgery (advanced melanoma)." If that applies, I guess the question then would be, is the disease onsidered removable by surgery, as you doc seems to think. 

                            I've read stage IIIc folks here saying stage IIIc patients should qualify for virtually all stage IV treatments (like pembro). Maybe some will chime in.

                            • October 7, 2014 at 5:24 pm
                            kylez
                            Participant

                              The Keytruda prescribing info doesn't talk about staging. Instead it says it is for disease that "…has spread or cannot be removed by surgery (advanced melanoma)." If that applies, I guess the question then would be, is the disease onsidered removable by surgery, as you doc seems to think. 

                              I've read stage IIIc folks here saying stage IIIc patients should qualify for virtually all stage IV treatments (like pembro). Maybe some will chime in.

                              • October 7, 2014 at 5:24 pm
                              kylez
                              Participant

                                The Keytruda prescribing info doesn't talk about staging. Instead it says it is for disease that "…has spread or cannot be removed by surgery (advanced melanoma)." If that applies, I guess the question then would be, is the disease onsidered removable by surgery, as you doc seems to think. 

                                I've read stage IIIc folks here saying stage IIIc patients should qualify for virtually all stage IV treatments (like pembro). Maybe some will chime in.

                                  • October 7, 2014 at 7:10 pm
                                  oldblue
                                  Participant

                                    I cant paste but some good results for stage 3c were announced last week for dabrafenib and trametnib. You will have to google it.

                                    I got it from a journal called onclive.com

                                    • October 7, 2014 at 7:10 pm
                                    oldblue
                                    Participant

                                      I cant paste but some good results for stage 3c were announced last week for dabrafenib and trametnib. You will have to google it.

                                      I got it from a journal called onclive.com

                                      • October 7, 2014 at 7:12 pm
                                      oldblue
                                      Participant

                                         

                                        ooops – the results were announced on 18 July this year.

                                        • October 7, 2014 at 7:12 pm
                                        oldblue
                                        Participant

                                           

                                          ooops – the results were announced on 18 July this year.

                                          • October 7, 2014 at 7:57 pm
                                          kentuckycat
                                          Participant

                                            Thank you all for the comments.  I will check into all the suggestions.  This is really helpful.

                                            • October 7, 2014 at 7:57 pm
                                            kentuckycat
                                            Participant

                                              Thank you all for the comments.  I will check into all the suggestions.  This is really helpful.

                                              • October 7, 2014 at 8:20 pm
                                              oldblue
                                              Participant

                                                There is also the COMBI-AD trial which is open for stage 3c at least it is in the UK.

                                                • October 7, 2014 at 8:20 pm
                                                oldblue
                                                Participant

                                                  There is also the COMBI-AD trial which is open for stage 3c at least it is in the UK.

                                                  • October 7, 2014 at 8:20 pm
                                                  oldblue
                                                  Participant

                                                    There is also the COMBI-AD trial which is open for stage 3c at least it is in the UK.

                                                    • October 7, 2014 at 7:57 pm
                                                    kentuckycat
                                                    Participant

                                                      Thank you all for the comments.  I will check into all the suggestions.  This is really helpful.

                                                      • October 7, 2014 at 7:12 pm
                                                      oldblue
                                                      Participant

                                                         

                                                        ooops – the results were announced on 18 July this year.

                                                        • October 7, 2014 at 7:10 pm
                                                        oldblue
                                                        Participant

                                                          I cant paste but some good results for stage 3c were announced last week for dabrafenib and trametnib. You will have to google it.

                                                          I got it from a journal called onclive.com

                                                          • October 8, 2014 at 6:08 pm
                                                          Julie in SoCal
                                                          Participant

                                                            Hi All!

                                                            I'm stage 3c and I had 6 intransit mets.  I received Ipi, even though technically my mets were resectable.  The thinking was that if there are 6 here there are probably more somewhere else and unseen, and so surgery would be a bit like whack-a-mole, slicing out stuff as it popped up.  Seemed reasonable to me.  

                                                            Peace,

                                                            Julie

                                                            Stage 3c: WLE, SNB, LND. INF, GM-CSF, IPI

                                                            • October 8, 2014 at 6:08 pm
                                                            Julie in SoCal
                                                            Participant

                                                              Hi All!

                                                              I'm stage 3c and I had 6 intransit mets.  I received Ipi, even though technically my mets were resectable.  The thinking was that if there are 6 here there are probably more somewhere else and unseen, and so surgery would be a bit like whack-a-mole, slicing out stuff as it popped up.  Seemed reasonable to me.  

                                                              Peace,

                                                              Julie

                                                              Stage 3c: WLE, SNB, LND. INF, GM-CSF, IPI

                                                              • October 8, 2014 at 6:08 pm
                                                              Julie in SoCal
                                                              Participant

                                                                Hi All!

                                                                I'm stage 3c and I had 6 intransit mets.  I received Ipi, even though technically my mets were resectable.  The thinking was that if there are 6 here there are probably more somewhere else and unseen, and so surgery would be a bit like whack-a-mole, slicing out stuff as it popped up.  Seemed reasonable to me.  

                                                                Peace,

                                                                Julie

                                                                Stage 3c: WLE, SNB, LND. INF, GM-CSF, IPI

                                                              • October 8, 2014 at 12:05 am
                                                              wesmeek
                                                              Participant

                                                                I am 2 years in to a trial at central kentucky research asc, stage 2b, 4.3 mm.

                                                                Vaccine called seviprotimut-L, just changed name from POL 103A.  Now second portion of Phase 3 at Ky Babtist Hosp near UK.

                                                                Have been told 50% increase of RFS over other drugs.  So far I am clean.

                                                                • October 8, 2014 at 12:05 am
                                                                wesmeek
                                                                Participant

                                                                  I am 2 years in to a trial at central kentucky research asc, stage 2b, 4.3 mm.

                                                                  Vaccine called seviprotimut-L, just changed name from POL 103A.  Now second portion of Phase 3 at Ky Babtist Hosp near UK.

                                                                  Have been told 50% increase of RFS over other drugs.  So far I am clean.

                                                                    • October 8, 2014 at 4:02 am
                                                                    Marianne quinn
                                                                    Participant

                                                                      My gut feeling is if you can get the Mel out of your body, you should. Seems like PD1 would be a better option than interferon too. Good luck and keep us updated.

                                                                      • October 8, 2014 at 4:02 am
                                                                      Marianne quinn
                                                                      Participant

                                                                        My gut feeling is if you can get the Mel out of your body, you should. Seems like PD1 would be a better option than interferon too. Good luck and keep us updated.

                                                                        • October 8, 2014 at 5:17 pm
                                                                        kentuckycat
                                                                        Participant

                                                                          Thank you all for the comments and suggestions.

                                                                          • October 8, 2014 at 5:17 pm
                                                                          kentuckycat
                                                                          Participant

                                                                            Thank you all for the comments and suggestions.

                                                                            • October 8, 2014 at 5:17 pm
                                                                            kentuckycat
                                                                            Participant

                                                                              Thank you all for the comments and suggestions.

                                                                              • October 8, 2014 at 4:02 am
                                                                              Marianne quinn
                                                                              Participant

                                                                                My gut feeling is if you can get the Mel out of your body, you should. Seems like PD1 would be a better option than interferon too. Good luck and keep us updated.

                                                                              • October 8, 2014 at 12:05 am
                                                                              wesmeek
                                                                              Participant

                                                                                I am 2 years in to a trial at central kentucky research asc, stage 2b, 4.3 mm.

                                                                                Vaccine called seviprotimut-L, just changed name from POL 103A.  Now second portion of Phase 3 at Ky Babtist Hosp near UK.

                                                                                Have been told 50% increase of RFS over other drugs.  So far I am clean.

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