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Step to get TIL treatment
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Step to get TIL treatment

› Forums › General Melanoma Community › Step to get TIL treatment

  • Post
    • January 15, 2015 at 1:37 pm
    jualonso
    Participant

      Hi folks,

      Im now after fourth dose of ipi, and will go to pd1 if it does not work. In this moment im thinking of a possible future, and i would like to know the steps i have to follow to get TIL treatment at NIH. Im spanish so i dont really know even if it is possible.

      Every comment will be welcome.

      Thanks

      Juan

    Viewing 5 reply threads
    • Replies
        • January 15, 2015 at 4:24 pm
        arthurjedi007
        Participant

          It is best to do til while you are strong which unless things have changed since last I've heard how you are doing I believe you are plenty strong enough to do it. I'm not so I didn't go through with it.

          if you were going to do it in the states I would call the trial coordinator in Bethesda Maryland. That is probably Jessica yinling at 3014962132 or June kryk at 3014511929 but she might be retired already. If you wanted to do it closer to home then I have no idea. They basically email you stuff to fill out and email back to them. Then they work with your doctor getting the rest of your records. Then they setup a time for you to visit them. 

          Artie

            • January 15, 2015 at 6:33 pm
            jualonso
            Participant

              Hi Artie,

              Thanks for take your time to response. Im strong enough for now to get the treatment, but as you know, things can change in the blink of an eye. I almost not remember how was everything before de dx. Is like it was in another life. I hope Artie anti pd1 continueworking for you and keep the disease under control. Thanks for all the information, but, will you have any email of them. Would be easier for me to contact onthis way. Anyway, thanks a lot, hang in there. New drugs are in the oven, ready to come out and outcome will be better than now.

               

              Juan

              • January 15, 2015 at 10:56 pm
              arthurjedi007
              Participant

                June kryk is [email protected]

                linda Williams is [email protected]

                someone is [email protected]

                Thats all the emails I have.

                Artie

                • January 15, 2015 at 10:56 pm
                arthurjedi007
                Participant

                  June kryk is [email protected]

                  linda Williams is [email protected]

                  someone is [email protected]

                  Thats all the emails I have.

                  Artie

                  • January 16, 2015 at 12:12 am
                  tschmith
                  Participant

                    HI Juan!

                         I was treated at NIH in March and April.  NIH treats people from all over the world.  They provide translators too.  You or your doctor will have to contact June or one of the others mentioned in the previous posts.  They will request your records and will set up an appointment to see you if they think you might qualify after looking at your records.  I didn't qualify for TIL because I didn't have a tumor they could use.  I did qualify for a similar trial called MAGE TCR.  That trial didn't appear to work but in early July I started getting infusions of Pembrolizumab and the two combined well.  I had a positive response after the first infusion of Pembro, now Keytruda.  

                        Good luck to you, Juan!

                        Terrie

                    • January 16, 2015 at 12:12 am
                    tschmith
                    Participant

                      HI Juan!

                           I was treated at NIH in March and April.  NIH treats people from all over the world.  They provide translators too.  You or your doctor will have to contact June or one of the others mentioned in the previous posts.  They will request your records and will set up an appointment to see you if they think you might qualify after looking at your records.  I didn't qualify for TIL because I didn't have a tumor they could use.  I did qualify for a similar trial called MAGE TCR.  That trial didn't appear to work but in early July I started getting infusions of Pembrolizumab and the two combined well.  I had a positive response after the first infusion of Pembro, now Keytruda.  

                          Good luck to you, Juan!

                          Terrie

                      • January 16, 2015 at 12:12 am
                      tschmith
                      Participant

                        HI Juan!

                             I was treated at NIH in March and April.  NIH treats people from all over the world.  They provide translators too.  You or your doctor will have to contact June or one of the others mentioned in the previous posts.  They will request your records and will set up an appointment to see you if they think you might qualify after looking at your records.  I didn't qualify for TIL because I didn't have a tumor they could use.  I did qualify for a similar trial called MAGE TCR.  That trial didn't appear to work but in early July I started getting infusions of Pembrolizumab and the two combined well.  I had a positive response after the first infusion of Pembro, now Keytruda.  

                            Good luck to you, Juan!

                            Terrie

                        • January 16, 2015 at 12:12 am
                        tschmith
                        Participant

                          HI Juan!

                               I was treated at NIH in March and April.  NIH treats people from all over the world.  They provide translators too.  You or your doctor will have to contact June or one of the others mentioned in the previous posts.  They will request your records and will set up an appointment to see you if they think you might qualify after looking at your records.  I didn't qualify for TIL because I didn't have a tumor they could use.  I did qualify for a similar trial called MAGE TCR.  That trial didn't appear to work but in early July I started getting infusions of Pembrolizumab and the two combined well.  I had a positive response after the first infusion of Pembro, now Keytruda.  

                              Good luck to you, Juan!

                              Terrie

                          • January 16, 2015 at 12:12 am
                          tschmith
                          Participant

                            HI Juan!

                                 I was treated at NIH in March and April.  NIH treats people from all over the world.  They provide translators too.  You or your doctor will have to contact June or one of the others mentioned in the previous posts.  They will request your records and will set up an appointment to see you if they think you might qualify after looking at your records.  I didn't qualify for TIL because I didn't have a tumor they could use.  I did qualify for a similar trial called MAGE TCR.  That trial didn't appear to work but in early July I started getting infusions of Pembrolizumab and the two combined well.  I had a positive response after the first infusion of Pembro, now Keytruda.  

                                Good luck to you, Juan!

                                Terrie

                            • January 16, 2015 at 12:25 am
                            jualonso
                            Participant
                              Thanks Terrie, good luck
                              • January 16, 2015 at 12:25 am
                              jualonso
                              Participant
                                Thanks Terrie, good luck
                                • January 16, 2015 at 12:25 am
                                jualonso
                                Participant
                                  Thanks Terrie, good luck
                                  • January 16, 2015 at 12:12 am
                                  tschmith
                                  Participant

                                    HI Juan!

                                         I was treated at NIH in March and April.  NIH treats people from all over the world.  They provide translators too.  You or your doctor will have to contact June or one of the others mentioned in the previous posts.  They will request your records and will set up an appointment to see you if they think you might qualify after looking at your records.  I didn't qualify for TIL because I didn't have a tumor they could use.  I did qualify for a similar trial called MAGE TCR.  That trial didn't appear to work but in early July I started getting infusions of Pembrolizumab and the two combined well.  I had a positive response after the first infusion of Pembro, now Keytruda.  

                                        Good luck to you, Juan!

                                        Terrie

                                    • January 16, 2015 at 12:23 am
                                    jualonso
                                    Participant
                                      You are amazing artie. Thanks a lot
                                      • January 16, 2015 at 12:23 am
                                      jualonso
                                      Participant
                                        You are amazing artie. Thanks a lot
                                        • January 16, 2015 at 12:23 am
                                        jualonso
                                        Participant
                                          You are amazing artie. Thanks a lot
                                          • January 17, 2015 at 1:30 am
                                          Maureen038
                                          Participant

                                            [email protected] is Dr. Steven Rosenberg's email. He pioneered the TIL therapy. I have written him personally at least four times and he has always replied back. Dr. Weber at Moffitt is another melanoma specialist in Florida who has TIL trials too. He is also very proficient at writing back and is an excellent source of knowledge. June Kryk has retired. Kathleen Moton's email is [email protected]. My husband went through the TIL trial so if you have any questions, I would be happy to help. I'm wishing you the best!

                                            Maureen

                                             

                                            • January 17, 2015 at 1:30 am
                                            Maureen038
                                            Participant

                                              [email protected] is Dr. Steven Rosenberg's email. He pioneered the TIL therapy. I have written him personally at least four times and he has always replied back. Dr. Weber at Moffitt is another melanoma specialist in Florida who has TIL trials too. He is also very proficient at writing back and is an excellent source of knowledge. June Kryk has retired. Kathleen Moton's email is [email protected]. My husband went through the TIL trial so if you have any questions, I would be happy to help. I'm wishing you the best!

                                              Maureen

                                               

                                              • January 17, 2015 at 11:29 am
                                              jualonso
                                              Participant

                                                Thanks Maureen, is nice to find people like you here, always trying to help others. 

                                                 

                                                • January 17, 2015 at 11:29 am
                                                jualonso
                                                Participant

                                                  Thanks Maureen, is nice to find people like you here, always trying to help others. 

                                                   

                                                  • January 18, 2015 at 11:18 pm
                                                  Maureen038
                                                  Participant

                                                    No problem. I'm wishing you the very best!!

                                                    • January 18, 2015 at 11:18 pm
                                                    Maureen038
                                                    Participant

                                                      No problem. I'm wishing you the very best!!

                                                      • January 18, 2015 at 11:18 pm
                                                      Maureen038
                                                      Participant

                                                        No problem. I'm wishing you the very best!!

                                                        • January 17, 2015 at 11:29 am
                                                        jualonso
                                                        Participant

                                                          Thanks Maureen, is nice to find people like you here, always trying to help others. 

                                                           

                                                          • January 17, 2015 at 1:30 am
                                                          Maureen038
                                                          Participant

                                                            [email protected] is Dr. Steven Rosenberg's email. He pioneered the TIL therapy. I have written him personally at least four times and he has always replied back. Dr. Weber at Moffitt is another melanoma specialist in Florida who has TIL trials too. He is also very proficient at writing back and is an excellent source of knowledge. June Kryk has retired. Kathleen Moton's email is [email protected]. My husband went through the TIL trial so if you have any questions, I would be happy to help. I'm wishing you the best!

                                                            Maureen

                                                             

                                                            • January 15, 2015 at 10:56 pm
                                                            arthurjedi007
                                                            Participant

                                                              June kryk is [email protected]

                                                              linda Williams is [email protected]

                                                              someone is [email protected]

                                                              Thats all the emails I have.

                                                              Artie

                                                              • January 15, 2015 at 6:33 pm
                                                              jualonso
                                                              Participant

                                                                Hi Artie,

                                                                Thanks for take your time to response. Im strong enough for now to get the treatment, but as you know, things can change in the blink of an eye. I almost not remember how was everything before de dx. Is like it was in another life. I hope Artie anti pd1 continueworking for you and keep the disease under control. Thanks for all the information, but, will you have any email of them. Would be easier for me to contact onthis way. Anyway, thanks a lot, hang in there. New drugs are in the oven, ready to come out and outcome will be better than now.

                                                                 

                                                                Juan

                                                                • January 15, 2015 at 6:33 pm
                                                                jualonso
                                                                Participant

                                                                  Hi Artie,

                                                                  Thanks for take your time to response. Im strong enough for now to get the treatment, but as you know, things can change in the blink of an eye. I almost not remember how was everything before de dx. Is like it was in another life. I hope Artie anti pd1 continueworking for you and keep the disease under control. Thanks for all the information, but, will you have any email of them. Would be easier for me to contact onthis way. Anyway, thanks a lot, hang in there. New drugs are in the oven, ready to come out and outcome will be better than now.

                                                                   

                                                                  Juan

                                                                • January 15, 2015 at 4:24 pm
                                                                arthurjedi007
                                                                Participant

                                                                  It is best to do til while you are strong which unless things have changed since last I've heard how you are doing I believe you are plenty strong enough to do it. I'm not so I didn't go through with it.

                                                                  if you were going to do it in the states I would call the trial coordinator in Bethesda Maryland. That is probably Jessica yinling at 3014962132 or June kryk at 3014511929 but she might be retired already. If you wanted to do it closer to home then I have no idea. They basically email you stuff to fill out and email back to them. Then they work with your doctor getting the rest of your records. Then they setup a time for you to visit them. 

                                                                  Artie

                                                                  • January 15, 2015 at 4:24 pm
                                                                  arthurjedi007
                                                                  Participant

                                                                    It is best to do til while you are strong which unless things have changed since last I've heard how you are doing I believe you are plenty strong enough to do it. I'm not so I didn't go through with it.

                                                                    if you were going to do it in the states I would call the trial coordinator in Bethesda Maryland. That is probably Jessica yinling at 3014962132 or June kryk at 3014511929 but she might be retired already. If you wanted to do it closer to home then I have no idea. They basically email you stuff to fill out and email back to them. Then they work with your doctor getting the rest of your records. Then they setup a time for you to visit them. 

                                                                    Artie

                                                                    • January 17, 2015 at 9:09 pm
                                                                    _Paul_
                                                                    Participant

                                                                      Hi Juan,

                                                                      Looks like we have two things in common, I used to fly paragliders and had an ultralight trike, a Cosmos from France, and both of us are interested in TIL. Not sure where you live, but TIL is also offered in Seattle at the SCCA. I just had a tumor harvested for that trial and am now waiting with fingers crossed that they can grow some TIL cells in the lab to put on ice for when I need them.

                                                                      Best – Paul.

                                                                      • January 17, 2015 at 9:09 pm
                                                                      _Paul_
                                                                      Participant

                                                                        Hi Juan,

                                                                        Looks like we have two things in common, I used to fly paragliders and had an ultralight trike, a Cosmos from France, and both of us are interested in TIL. Not sure where you live, but TIL is also offered in Seattle at the SCCA. I just had a tumor harvested for that trial and am now waiting with fingers crossed that they can grow some TIL cells in the lab to put on ice for when I need them.

                                                                        Best – Paul.

                                                                        • January 17, 2015 at 9:09 pm
                                                                        _Paul_
                                                                        Participant

                                                                          Hi Juan,

                                                                          Looks like we have two things in common, I used to fly paragliders and had an ultralight trike, a Cosmos from France, and both of us are interested in TIL. Not sure where you live, but TIL is also offered in Seattle at the SCCA. I just had a tumor harvested for that trial and am now waiting with fingers crossed that they can grow some TIL cells in the lab to put on ice for when I need them.

                                                                          Best – Paul.

                                                                      Viewing 5 reply threads
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