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 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 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 ncisbirc@mail.nih.gov

        linda Williams is Linda-williams@nih.gov

        someone is sar@mail.nih.gov

        Thats all the emails I have.

        Artie

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

        June kryk is ncisbirc@mail.nih.gov

        linda Williams is Linda-williams@nih.gov

        someone is sar@mail.nih.gov

        Thats all the emails I have.

        Artie

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

        June kryk is ncisbirc@mail.nih.gov

        linda Williams is Linda-williams@nih.gov

        someone is sar@mail.nih.gov

        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 12:12 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 12:23 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

        Sar@mail.nih.gov 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 mortonk@mail.nih.gov. 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

        Sar@mail.nih.gov 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 mortonk@mail.nih.gov. 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

        Sar@mail.nih.gov 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 mortonk@mail.nih.gov. 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 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 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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