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ACT / YIL question
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ACT / YIL question

› Forums › General Melanoma Community › ACT / YIL question

  • Post
    • March 16, 2014 at 11:14 pm
    pigs_sty
    Participant

      Hi,

      MY wife is currently on Vemurafenib (just over a week) and we have seen some postive responses so far. However we are aware that this is very unlikely to be a long term treatment. We have done some reasearch in to TIL/ACT and see this as a possible way forward. Would anyone be willing to share stories of going through this treatment.

      Also does using Vemurafinib prohibit undertaking this treatment or can they be ran alongside each other?

      Once the TIL has been done is there a chance that this could be "it" and no further treatments? Some people seem to take PD-1 after TIL?

      Thanks and stay strong.

    Viewing 5 reply threads
    • Replies
        • March 16, 2014 at 11:15 pm
        pigs_sty
        Participant

          Sorry, obv should be TIL, but I cant edit the title for some reason.

          • March 16, 2014 at 11:15 pm
          pigs_sty
          Participant

            Sorry, obv should be TIL, but I cant edit the title for some reason.

            • March 16, 2014 at 11:15 pm
            pigs_sty
            Participant

              Sorry, obv should be TIL, but I cant edit the title for some reason.

                • March 17, 2014 at 10:45 am
                tschmith
                Participant

                  I was hoping TIL would be the therapy for me at NIH, but they couldn't get my cells to grow.  I didn't have a tumor that met the requrements and could be safely removed so they drew cells from a mass in back that has wrapped around my ribs.  When they do that, the likelihood of the cells growing diminishes because they get so much tissue, etc.  However, I will be able to do a gene transfer therapy called MAGE TCR beginning on Monday, 3/24.

                  Getting back to the TIL.  My doctor did say that if needed TIL can be followed with anti pd1…depending on the response to the TIL.

                  Best wishes and Happy St. Pat's Day from snowy DC!

                  Terrie

                  • March 17, 2014 at 10:45 am
                  tschmith
                  Participant

                    I was hoping TIL would be the therapy for me at NIH, but they couldn't get my cells to grow.  I didn't have a tumor that met the requrements and could be safely removed so they drew cells from a mass in back that has wrapped around my ribs.  When they do that, the likelihood of the cells growing diminishes because they get so much tissue, etc.  However, I will be able to do a gene transfer therapy called MAGE TCR beginning on Monday, 3/24.

                    Getting back to the TIL.  My doctor did say that if needed TIL can be followed with anti pd1…depending on the response to the TIL.

                    Best wishes and Happy St. Pat's Day from snowy DC!

                    Terrie

                    • March 17, 2014 at 10:45 am
                    tschmith
                    Participant

                      I was hoping TIL would be the therapy for me at NIH, but they couldn't get my cells to grow.  I didn't have a tumor that met the requrements and could be safely removed so they drew cells from a mass in back that has wrapped around my ribs.  When they do that, the likelihood of the cells growing diminishes because they get so much tissue, etc.  However, I will be able to do a gene transfer therapy called MAGE TCR beginning on Monday, 3/24.

                      Getting back to the TIL.  My doctor did say that if needed TIL can be followed with anti pd1…depending on the response to the TIL.

                      Best wishes and Happy St. Pat's Day from snowy DC!

                      Terrie

                      • March 17, 2014 at 3:23 pm
                      Phil S
                      Participant

                        Okay, so it really depends on where you do the TIL trial, I think NIH had a TIL trial that includes Braf drugs, but unsure of the current status.  My husband, Phil did TIL at MDAnderson and like most trials had a thirty day washout.  (He had done 6 rounds of  biochemo right before TIL, and is Braf negative).  Phil is still doing well 22 months post TIL, next scans in April.  We could love to try AntiPD1, if he progresses.  Hope more and more immuno therapies keep coming out to target melanoma.  All the best,  Valerie 

                        • March 17, 2014 at 3:23 pm
                        Phil S
                        Participant

                          Okay, so it really depends on where you do the TIL trial, I think NIH had a TIL trial that includes Braf drugs, but unsure of the current status.  My husband, Phil did TIL at MDAnderson and like most trials had a thirty day washout.  (He had done 6 rounds of  biochemo right before TIL, and is Braf negative).  Phil is still doing well 22 months post TIL, next scans in April.  We could love to try AntiPD1, if he progresses.  Hope more and more immuno therapies keep coming out to target melanoma.  All the best,  Valerie 

                          • March 17, 2014 at 3:23 pm
                          Phil S
                          Participant

                            Okay, so it really depends on where you do the TIL trial, I think NIH had a TIL trial that includes Braf drugs, but unsure of the current status.  My husband, Phil did TIL at MDAnderson and like most trials had a thirty day washout.  (He had done 6 rounds of  biochemo right before TIL, and is Braf negative).  Phil is still doing well 22 months post TIL, next scans in April.  We could love to try AntiPD1, if he progresses.  Hope more and more immuno therapies keep coming out to target melanoma.  All the best,  Valerie 

                            • March 17, 2014 at 8:36 pm
                            Cooper
                            Participant

                              I think that after you fail TIL they suggest PD1 cause its the best thing out there right now.  No connection to what they do.  Still not a lot of numbers to figure out if TIL is a good therapy yet, only a few qualify and then their cells have to grow.  It is very toxic too.  So I'd go with the PD1 first as it is now going to be out there without a trial.

                              • March 17, 2014 at 8:36 pm
                              Cooper
                              Participant

                                I think that after you fail TIL they suggest PD1 cause its the best thing out there right now.  No connection to what they do.  Still not a lot of numbers to figure out if TIL is a good therapy yet, only a few qualify and then their cells have to grow.  It is very toxic too.  So I'd go with the PD1 first as it is now going to be out there without a trial.

                                • March 17, 2014 at 8:36 pm
                                Cooper
                                Participant

                                  I think that after you fail TIL they suggest PD1 cause its the best thing out there right now.  No connection to what they do.  Still not a lot of numbers to figure out if TIL is a good therapy yet, only a few qualify and then their cells have to grow.  It is very toxic too.  So I'd go with the PD1 first as it is now going to be out there without a trial.

                                • March 17, 2014 at 9:59 pm
                                Jeff G.
                                Participant

                                  My wife underwent a TIL/ACT at NIH / NCI (currently NED).  They have a few protocols to consider including one with vemruafenib.  However, if your wife progresses, they would probably recommend she just discontinue taking it and start the TIL process.  It is also unlikely that after undergoing TIL that she couldn’t take other treatments.  I know people who failed TIL and went on to try Ipi or PD-1.

                                  I would recommend anybody considering TIL to do it at NCI and you can absolutely call their referral line and ask these questions now – 866-820-4505.  June Kryk and Linda Williams are two of the referral nurses that can answer these types of questions.

                                  • March 17, 2014 at 9:59 pm
                                  Jeff G.
                                  Participant

                                    My wife underwent a TIL/ACT at NIH / NCI (currently NED).  They have a few protocols to consider including one with vemruafenib.  However, if your wife progresses, they would probably recommend she just discontinue taking it and start the TIL process.  It is also unlikely that after undergoing TIL that she couldn’t take other treatments.  I know people who failed TIL and went on to try Ipi or PD-1.

                                    I would recommend anybody considering TIL to do it at NCI and you can absolutely call their referral line and ask these questions now – 866-820-4505.  June Kryk and Linda Williams are two of the referral nurses that can answer these types of questions.

                                    • March 17, 2014 at 9:59 pm
                                    Jeff G.
                                    Participant

                                      My wife underwent a TIL/ACT at NIH / NCI (currently NED).  They have a few protocols to consider including one with vemruafenib.  However, if your wife progresses, they would probably recommend she just discontinue taking it and start the TIL process.  It is also unlikely that after undergoing TIL that she couldn’t take other treatments.  I know people who failed TIL and went on to try Ipi or PD-1.

                                      I would recommend anybody considering TIL to do it at NCI and you can absolutely call their referral line and ask these questions now – 866-820-4505.  June Kryk and Linda Williams are two of the referral nurses that can answer these types of questions.

                                        • March 19, 2014 at 10:41 pm
                                        pigs_sty
                                        Participant

                                          Thanks for all the help, I didnt think TIL/ACT would still be classed as a trial? We are based in the UK and there is one centre in the country that offers this therapy.

                                          I beleive there are chances of complete remission with TIL. I'm assuming PD1 is only taken if there are signs the melanoma is coming back?

                                          • March 19, 2014 at 10:41 pm
                                          pigs_sty
                                          Participant

                                            Thanks for all the help, I didnt think TIL/ACT would still be classed as a trial? We are based in the UK and there is one centre in the country that offers this therapy.

                                            I beleive there are chances of complete remission with TIL. I'm assuming PD1 is only taken if there are signs the melanoma is coming back?

                                            • March 19, 2014 at 10:41 pm
                                            pigs_sty
                                            Participant

                                              Thanks for all the help, I didnt think TIL/ACT would still be classed as a trial? We are based in the UK and there is one centre in the country that offers this therapy.

                                              I beleive there are chances of complete remission with TIL. I'm assuming PD1 is only taken if there are signs the melanoma is coming back?

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