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TIL non-responder – Time to find a new treatment

Forums General Melanoma Community TIL non-responder – Time to find a new treatment

  • Post
    Angela C
    Participant
      Hello.

      I got back Tuesday from a follow up visit at NIH. I did the IL-12 TIL trial in April and have been on monthly scans and follow ups. Last month I had a new brain met. I had SRS at the beginning of October. Unfortunately, my adrenal gland tumor continues to grow and now I have a new spot behind the pancreas as well. I’m now officially a non-responder to the TIL trial. So, now it’s time to find something new.

      I’m checking into a MEK trial. I’m wild type BRAF, though, so I’m trying to find one that doesn’t require the mutation. I’m also considering an Ippi reinduction. The doc at NIH said my immune system is different now, so I could have s better response to it the second time around.

      I was hoping to do surgery and take the adrenal tumor out since I’m now having a fair amount of pain from it. But, it’s pretty much inoperable at this point.

      So, it’s back to limbo land now waiting to hear from docs and trying to make a decision on the next step. I hate this part. There’s so much anxiety knowing the current treatment isn’t working and trying to find the next step.

      Do any of you have experience with a MEK trial for people without the BRAF mutation?

      ~Angela

    Viewing 14 reply threads
    • Replies
        Swanee
        Participant

          Hi Angela,  

          So sorry to hear this news….. you've been through so much.  I don't have answers to your questions but just want you to know how much I appreciate your post and wish you much luck with future treatments and sincerely hope that you find the one that cures you….as I have read from many on this website who have found that magic silver bullet that was theirs and now living free from this nightmare.

          My next treatment option is the TIL.   I was hoping it would come to Seattle and I could receive it here.  However, it looks like it may be awhile and now I am being referred to NCI or MD Anderson.  Going through the hoops now to find out where I would fit in with their protocols and if I am the patient they are looking for.   This is disappointing to hear that TIL did not work for you.  I am skeptical of this treatment, unsure of the mixed results I read  about,  but not many other good options out there for me right now.

          Good luck to you Angela and I pray that a treatment is out there for you that works and beats the sh** out of this beast!         

          Please keep us posted to your findings and update us with your latest discoveries.   All this information, no matter how small or insignificant it may seem is invaluable to all of us who scower these websites looking for the smallest tidbit of information that offers a link  or thread to our journey with this disease.   Everything we read here leads us to hope and possible cures for the  battle we are in!  I wish you well and I wish you a cure!  God Bless you and I wish you God's strength and courage as you negotiate your way through  daily struggles and you find your way through this melanoma maze!

          Stay strong, 

          Swanee

          Swanee
          Participant

            Hi Angela,  

            So sorry to hear this news….. you've been through so much.  I don't have answers to your questions but just want you to know how much I appreciate your post and wish you much luck with future treatments and sincerely hope that you find the one that cures you….as I have read from many on this website who have found that magic silver bullet that was theirs and now living free from this nightmare.

            My next treatment option is the TIL.   I was hoping it would come to Seattle and I could receive it here.  However, it looks like it may be awhile and now I am being referred to NCI or MD Anderson.  Going through the hoops now to find out where I would fit in with their protocols and if I am the patient they are looking for.   This is disappointing to hear that TIL did not work for you.  I am skeptical of this treatment, unsure of the mixed results I read  about,  but not many other good options out there for me right now.

            Good luck to you Angela and I pray that a treatment is out there for you that works and beats the sh** out of this beast!         

            Please keep us posted to your findings and update us with your latest discoveries.   All this information, no matter how small or insignificant it may seem is invaluable to all of us who scower these websites looking for the smallest tidbit of information that offers a link  or thread to our journey with this disease.   Everything we read here leads us to hope and possible cures for the  battle we are in!  I wish you well and I wish you a cure!  God Bless you and I wish you God's strength and courage as you negotiate your way through  daily struggles and you find your way through this melanoma maze!

            Stay strong, 

            Swanee

              Angela C
              Participant

                Hi Swanee.

                Thanks so much for your reply. Best of luck to you on your search for TIL trial. Please don't be discouraged by my results. Prior to my TIL treatment, my adrenal tumor was growing, growing, growing and I got about six months of fairly stable scans after TIL. So, while it wan't my cure, it certainly slowed down growth and bought me some time.

                I know or have heard of so many people that have had great success with TIL. It has does amazing things for lots of people, so keep hope. It could do the trick for you!

                We loved it at NIH. The doctors and nursing staff are amazing and it's a great place to be. I hope that they have something for you!

                ~Angela

                Angela C
                Participant

                  Hi Swanee.

                  Thanks so much for your reply. Best of luck to you on your search for TIL trial. Please don't be discouraged by my results. Prior to my TIL treatment, my adrenal tumor was growing, growing, growing and I got about six months of fairly stable scans after TIL. So, while it wan't my cure, it certainly slowed down growth and bought me some time.

                  I know or have heard of so many people that have had great success with TIL. It has does amazing things for lots of people, so keep hope. It could do the trick for you!

                  We loved it at NIH. The doctors and nursing staff are amazing and it's a great place to be. I hope that they have something for you!

                  ~Angela

                  Angela C
                  Participant

                    Hi Swanee.

                    Thanks so much for your reply. Best of luck to you on your search for TIL trial. Please don't be discouraged by my results. Prior to my TIL treatment, my adrenal tumor was growing, growing, growing and I got about six months of fairly stable scans after TIL. So, while it wan't my cure, it certainly slowed down growth and bought me some time.

                    I know or have heard of so many people that have had great success with TIL. It has does amazing things for lots of people, so keep hope. It could do the trick for you!

                    We loved it at NIH. The doctors and nursing staff are amazing and it's a great place to be. I hope that they have something for you!

                    ~Angela

                  Swanee
                  Participant

                    Hi Angela,  

                    So sorry to hear this news….. you've been through so much.  I don't have answers to your questions but just want you to know how much I appreciate your post and wish you much luck with future treatments and sincerely hope that you find the one that cures you….as I have read from many on this website who have found that magic silver bullet that was theirs and now living free from this nightmare.

                    My next treatment option is the TIL.   I was hoping it would come to Seattle and I could receive it here.  However, it looks like it may be awhile and now I am being referred to NCI or MD Anderson.  Going through the hoops now to find out where I would fit in with their protocols and if I am the patient they are looking for.   This is disappointing to hear that TIL did not work for you.  I am skeptical of this treatment, unsure of the mixed results I read  about,  but not many other good options out there for me right now.

                    Good luck to you Angela and I pray that a treatment is out there for you that works and beats the sh** out of this beast!         

                    Please keep us posted to your findings and update us with your latest discoveries.   All this information, no matter how small or insignificant it may seem is invaluable to all of us who scower these websites looking for the smallest tidbit of information that offers a link  or thread to our journey with this disease.   Everything we read here leads us to hope and possible cures for the  battle we are in!  I wish you well and I wish you a cure!  God Bless you and I wish you God's strength and courage as you negotiate your way through  daily struggles and you find your way through this melanoma maze!

                    Stay strong, 

                    Swanee

                    aldakota22
                    Participant

                      Praying that your next course of treatmant. kicks melanomas butt.Keep fighting.Beat the Beast.  AL

                      aldakota22
                      Participant

                        Praying that your next course of treatmant. kicks melanomas butt.Keep fighting.Beat the Beast.  AL

                        aldakota22
                        Participant

                          Praying that your next course of treatmant. kicks melanomas butt.Keep fighting.Beat the Beast.  AL

                          Phil S
                          Participant
                            Angela, I feel bad that you have to find another treatment, but I do believe that TIL can change/improve your immune system, so will pray that Yervoy or whatever treatment you decide on, will kick your system into overdrive. Please keep up the fight, I am sure you are tired, but melanoma treatment is improving and always changing. I think MEK is another interesting treatment alternative. You are in our thoughts and prayers, God Bless, Valerie (Phil’s wife)
                            Phil S
                            Participant
                              Angela, I feel bad that you have to find another treatment, but I do believe that TIL can change/improve your immune system, so will pray that Yervoy or whatever treatment you decide on, will kick your system into overdrive. Please keep up the fight, I am sure you are tired, but melanoma treatment is improving and always changing. I think MEK is another interesting treatment alternative. You are in our thoughts and prayers, God Bless, Valerie (Phil’s wife)
                              Phil S
                              Participant
                                Angela, I feel bad that you have to find another treatment, but I do believe that TIL can change/improve your immune system, so will pray that Yervoy or whatever treatment you decide on, will kick your system into overdrive. Please keep up the fight, I am sure you are tired, but melanoma treatment is improving and always changing. I think MEK is another interesting treatment alternative. You are in our thoughts and prayers, God Bless, Valerie (Phil’s wife)
                                FormerCaregiver
                                Participant

                                  Angela, I am sorry to read that you are a non-responder to the TIL trial. Perhaps the
                                  following trials could be worth investigating:
                                  http://www.clinicaltrials.gov/ct2/results?term=braf+wild+melanoma&Search=Search

                                  Hope this helps

                                  Frank from Australia

                                    Angela C
                                    Participant

                                      Hi Frank.

                                      Thanks for the links. I took a look at them and I don't think I would qualify for either because I've had too many prior treatments and one of them says no history of brain mets and and I've had two mets. It's tough to find trials once you've had as many treatments as I've had. =/

                                      Thanks for the links, though. I appreciate you taking the time to do that search for me!

                                      ~Angela

                                      Angela C
                                      Participant

                                        Hi Frank.

                                        Thanks for the links. I took a look at them and I don't think I would qualify for either because I've had too many prior treatments and one of them says no history of brain mets and and I've had two mets. It's tough to find trials once you've had as many treatments as I've had. =/

                                        Thanks for the links, though. I appreciate you taking the time to do that search for me!

                                        ~Angela

                                        Angela C
                                        Participant

                                          Hi Frank.

                                          Thanks for the links. I took a look at them and I don't think I would qualify for either because I've had too many prior treatments and one of them says no history of brain mets and and I've had two mets. It's tough to find trials once you've had as many treatments as I've had. =/

                                          Thanks for the links, though. I appreciate you taking the time to do that search for me!

                                          ~Angela

                                        FormerCaregiver
                                        Participant

                                          Angela, I am sorry to read that you are a non-responder to the TIL trial. Perhaps the
                                          following trials could be worth investigating:
                                          http://www.clinicaltrials.gov/ct2/results?term=braf+wild+melanoma&Search=Search

                                          Hope this helps

                                          Frank from Australia

                                          FormerCaregiver
                                          Participant

                                            Angela, I am sorry to read that you are a non-responder to the TIL trial. Perhaps the
                                            following trials could be worth investigating:
                                            http://www.clinicaltrials.gov/ct2/results?term=braf+wild+melanoma&Search=Search

                                            Hope this helps

                                            Frank from Australia

                                            Theresa123
                                            Participant

                                              Hi Angela,  I too went to NIH and had TIL.  I also did not respond.  I was so disapointed.  However, a year later, a Doctor at Kaiser told me,  that they really don't know why I am alive, and they think it was the TIL.  Even though I did not respond, I actually had growth, something was helping, and that is what they figured out.  Don't despair.  I also have had too many treatments, interferon, biochemotherapy, TIL and Yervoy.  Nobody is interested in me any more either for clinical trials.

                                              I hope Anti PD 1 gets approved.  I think that is definitely worth doing.  Zelboraf not so much.

                                              take care, and don't give up.

                                              Terri

                                              Theresa123
                                              Participant

                                                Hi Angela,  I too went to NIH and had TIL.  I also did not respond.  I was so disapointed.  However, a year later, a Doctor at Kaiser told me,  that they really don't know why I am alive, and they think it was the TIL.  Even though I did not respond, I actually had growth, something was helping, and that is what they figured out.  Don't despair.  I also have had too many treatments, interferon, biochemotherapy, TIL and Yervoy.  Nobody is interested in me any more either for clinical trials.

                                                I hope Anti PD 1 gets approved.  I think that is definitely worth doing.  Zelboraf not so much.

                                                take care, and don't give up.

                                                Terri

                                                Theresa123
                                                Participant

                                                  Hi Angela,  I too went to NIH and had TIL.  I also did not respond.  I was so disapointed.  However, a year later, a Doctor at Kaiser told me,  that they really don't know why I am alive, and they think it was the TIL.  Even though I did not respond, I actually had growth, something was helping, and that is what they figured out.  Don't despair.  I also have had too many treatments, interferon, biochemotherapy, TIL and Yervoy.  Nobody is interested in me any more either for clinical trials.

                                                  I hope Anti PD 1 gets approved.  I think that is definitely worth doing.  Zelboraf not so much.

                                                  take care, and don't give up.

                                                  Terri

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