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Who’s been to NIH/NCI?

Forums General Melanoma Community Who’s been to NIH/NCI?

  • Post
    Angela C
    Participant
      Hi there.

      I have an adrenal tumor and a tumor next to the pancreas that need to be removed surgically since I have failed IL2, MDX-1106 and Yervoy. It’s been decided to try and get into the TIL trial.

      My doctors office contacted NCI today and I an waiting to hear from them on what information I need to send. I’m just wondering how long it has taken others to get in for a consult? We as patients always want things done yesterday. 🙂 I’m just concerned how long it might take for me to get everything compiled and sent and then how long it will take got them to get me scheduled. Every day we wait us another say these tumors are growing and becoming harder to remove surgically.

      Also, do you know if they will remove just part of a tumor for TIL if they are unable to remove the whole thing?

      Thanks!!

      ~Angela

    Viewing 11 reply threads
    • Replies
        mimi0201
        Participant

               My husband was a patient at NIH about this time last year.  It took us less than a week to get an appt.  We waited 2 days for his surgery after our consultation out there.  They move very quickly and efficiently.   Much more so than the private sector.  I can not say enough great things about our experiences.  It was extra ordinary care.  Good luck.

          mimi0201
          Participant

                 My husband was a patient at NIH about this time last year.  It took us less than a week to get an appt.  We waited 2 days for his surgery after our consultation out there.  They move very quickly and efficiently.   Much more so than the private sector.  I can not say enough great things about our experiences.  It was extra ordinary care.  Good luck.

            mimi0201
            Participant

                   My husband was a patient at NIH about this time last year.  It took us less than a week to get an appt.  We waited 2 days for his surgery after our consultation out there.  They move very quickly and efficiently.   Much more so than the private sector.  I can not say enough great things about our experiences.  It was extra ordinary care.  Good luck.

              Rebecca and Bob
              Participant

                Angela,

                 

                My husband is also a patient with NIH and we also cannot say enough positive things about them. When you are in their care they do move quickly. My husband did not do TIL, but has had IL-2 and two major surgeries there and anything they handled we always felt like he was in the best hands. Of course we are due to go back for scans next week. I want to wish you the best and hope they get back to you and get you in.

                Rebecca

                Rebecca and Bob
                Participant

                  Angela,

                   

                  My husband is also a patient with NIH and we also cannot say enough positive things about them. When you are in their care they do move quickly. My husband did not do TIL, but has had IL-2 and two major surgeries there and anything they handled we always felt like he was in the best hands. Of course we are due to go back for scans next week. I want to wish you the best and hope they get back to you and get you in.

                  Rebecca

                  Rebecca and Bob
                  Participant

                    Angela,

                     

                    My husband is also a patient with NIH and we also cannot say enough positive things about them. When you are in their care they do move quickly. My husband did not do TIL, but has had IL-2 and two major surgeries there and anything they handled we always felt like he was in the best hands. Of course we are due to go back for scans next week. I want to wish you the best and hope they get back to you and get you in.

                    Rebecca

                    LynnLuc
                    Participant

                      I went for an assessment for a trial with Dr Rosenberg and it took about 2 weeks because I needed to get Mayo to send them like 15 unstainned slides of my melanoma sent, otherwise it would have been just a week…

                        LynnLuc
                        Participant

                          PS…Joe went to the NIH and started TIL and he isn't doing well   here is his page   http://www.caringbridge.org/visit/joebillek  I guess the treatment friend his bone marrow and it didn't recover.

                          boot2aboot
                          Participant

                            Lynn,

                            TIL at NIH sounds scary especially after Val…Dr Weber did an Adoptive Cell Transfer Webinar and he talked about NIH's protocol…not for the faint hearted….

                            boots

                            boot2aboot
                            Participant

                              Lynn,

                              TIL at NIH sounds scary especially after Val…Dr Weber did an Adoptive Cell Transfer Webinar and he talked about NIH's protocol…not for the faint hearted….

                              boots

                              boot2aboot
                              Participant

                                Lynn,

                                TIL at NIH sounds scary especially after Val…Dr Weber did an Adoptive Cell Transfer Webinar and he talked about NIH's protocol…not for the faint hearted….

                                boots

                                LynnLuc
                                Participant

                                  PS…Joe went to the NIH and started TIL and he isn't doing well   here is his page   http://www.caringbridge.org/visit/joebillek  I guess the treatment friend his bone marrow and it didn't recover.

                                  LynnLuc
                                  Participant

                                    PS…Joe went to the NIH and started TIL and he isn't doing well   here is his page   http://www.caringbridge.org/visit/joebillek  I guess the treatment friend his bone marrow and it didn't recover.

                                  LynnLuc
                                  Participant

                                    I went for an assessment for a trial with Dr Rosenberg and it took about 2 weeks because I needed to get Mayo to send them like 15 unstainned slides of my melanoma sent, otherwise it would have been just a week…

                                    LynnLuc
                                    Participant

                                      I went for an assessment for a trial with Dr Rosenberg and it took about 2 weeks because I needed to get Mayo to send them like 15 unstainned slides of my melanoma sent, otherwise it would have been just a week…

                                      Angela C
                                      Participant

                                        What all did you have to collect to have sent them? I have heard that they will want the slides from the original diagnosis. I'm assuming that they will want the treatment notes from the doctors from the IL-2, MDX-1106 and Yervoy and the most recent scan write ups and copies on disc. I'm just wondering if I'm going to have to track down everything from the last five years? I have a binder that has most things in it except for the last year basically. So, I'm hoping I just have to get notes from the last year and the slides and then I'll be good to go.

                                        I'm a little concerned about my slides because at one point they were lost and I'm not sure if they ever were found. =(

                                        I have a message in with Linda at NIH and I'm waiting for a phone call back to tell me what I need to collect. I'm getting anxious sitting around and waiting. All of the hurry up and wait we experience time after time gets old.

                                        Angela C
                                        Participant

                                          What all did you have to collect to have sent them? I have heard that they will want the slides from the original diagnosis. I'm assuming that they will want the treatment notes from the doctors from the IL-2, MDX-1106 and Yervoy and the most recent scan write ups and copies on disc. I'm just wondering if I'm going to have to track down everything from the last five years? I have a binder that has most things in it except for the last year basically. So, I'm hoping I just have to get notes from the last year and the slides and then I'll be good to go.

                                          I'm a little concerned about my slides because at one point they were lost and I'm not sure if they ever were found. =(

                                          I have a message in with Linda at NIH and I'm waiting for a phone call back to tell me what I need to collect. I'm getting anxious sitting around and waiting. All of the hurry up and wait we experience time after time gets old.

                                          Angela C
                                          Participant

                                            What all did you have to collect to have sent them? I have heard that they will want the slides from the original diagnosis. I'm assuming that they will want the treatment notes from the doctors from the IL-2, MDX-1106 and Yervoy and the most recent scan write ups and copies on disc. I'm just wondering if I'm going to have to track down everything from the last five years? I have a binder that has most things in it except for the last year basically. So, I'm hoping I just have to get notes from the last year and the slides and then I'll be good to go.

                                            I'm a little concerned about my slides because at one point they were lost and I'm not sure if they ever were found. =(

                                            I have a message in with Linda at NIH and I'm waiting for a phone call back to tell me what I need to collect. I'm getting anxious sitting around and waiting. All of the hurry up and wait we experience time after time gets old.

                                        Viewing 11 reply threads
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