NIH different treatments

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  • Post
    • June 25, 2015 at 6:29 pm
    arthurjedi007
    Participant

      Thought someone might be interested to know NIH has different treatments than what I'm calling standard TIL. Apparently they test a tube of your blood looking for some type of melanoma. I sent this ahead of time. They also test your biopsy material looking for some type of melanoma. I also had that sent ahead of time. Now they just called it type I'm calling it type of melanoma. If the type is of something they've had success with over the last couple decades then they have a treatment that has a better success than their standard TIL. I could hear in her voice she was disappointed mine was not the right type. So it is still possible to maybe get what I call standard TIL for me. I'll have to go see them for screening. Just thought that was interesting to know. Now whether those treatments are some other type of TIL I don't know but I suspect it. Like maybe someone else's tcells thst worked great for that type I dunno I'm just speculating. I was kind of taken back when she said she had bad news which was about the types then she said they weren't seeing measurable stuff so I had to rattle off several off the top of my head I know the ct has shown the exact centimeters. So I wasn't thinking clearly about the TIL types until later.

      Artie

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    • Replies
        • June 25, 2015 at 9:25 pm
        Eileensulliv
        Participant

          Good to know, Artie! And thank you! NIH's TIL has been one of my backup plans. NIH is even closer to me than John's Hopkins. When will you be visiting NIH?

            • June 25, 2015 at 11:34 pm
            arthurjedi007
            Participant

              Not sure yet. I'm going to mayo next week for ablation. Waiting to see how I feel after that. Tentatively in 4 weeks. Have to be off pd1 for 2 weeks before first visit. Also got a call in if i understand correctly I'm not a type they've successfully treated but does that mean they never treated my type so I could be the first of my type they cure or have they treated my type a bunch of times unsuccessfully. Or maybe I just don't understand this type stuff. I expect to hear what they say tomorrow.

              Artie

              • June 25, 2015 at 11:34 pm
              arthurjedi007
              Participant

                Not sure yet. I'm going to mayo next week for ablation. Waiting to see how I feel after that. Tentatively in 4 weeks. Have to be off pd1 for 2 weeks before first visit. Also got a call in if i understand correctly I'm not a type they've successfully treated but does that mean they never treated my type so I could be the first of my type they cure or have they treated my type a bunch of times unsuccessfully. Or maybe I just don't understand this type stuff. I expect to hear what they say tomorrow.

                Artie

                • June 25, 2015 at 11:34 pm
                arthurjedi007
                Participant

                  Not sure yet. I'm going to mayo next week for ablation. Waiting to see how I feel after that. Tentatively in 4 weeks. Have to be off pd1 for 2 weeks before first visit. Also got a call in if i understand correctly I'm not a type they've successfully treated but does that mean they never treated my type so I could be the first of my type they cure or have they treated my type a bunch of times unsuccessfully. Or maybe I just don't understand this type stuff. I expect to hear what they say tomorrow.

                  Artie

                • June 25, 2015 at 9:25 pm
                Eileensulliv
                Participant

                  Good to know, Artie! And thank you! NIH's TIL has been one of my backup plans. NIH is even closer to me than John's Hopkins. When will you be visiting NIH?

                  • June 25, 2015 at 9:25 pm
                  Eileensulliv
                  Participant

                    Good to know, Artie! And thank you! NIH's TIL has been one of my backup plans. NIH is even closer to me than John's Hopkins. When will you be visiting NIH?

                    • June 26, 2015 at 2:18 pm
                    arthurjedi007
                    Participant

                      Ok my speculation was wrong. The blood and tumor testing is for various antigens. If that testing comes back positive then they have other trials they could do. But she said so far they haven't had as much success with those yet. Since they came back negative all they have is TIL. She said that they have roughly a 40 to 50% response rate. Of those who respond about 20% give or take a few percent are cured and usually durable for years.

                      Artie

                        • June 26, 2015 at 10:53 pm
                        BrianP
                        Participant

                          Wish they were better but those aren't bad odds Artie.  I've also always have been a believer in the cumulative effects of treatments.  With all you've been through and tried you sure would think you're immune system is "primed" for the payoff punch with TIL.  Really hope it works out that you can get the treatment.

                          Brian

                           

                          • June 26, 2015 at 11:05 pm
                          BrianP
                          Participant

                            "your" immune system not "you're" immune system.  Man I wish this site had a edit feature!

                            • June 26, 2015 at 11:05 pm
                            BrianP
                            Participant

                              "your" immune system not "you're" immune system.  Man I wish this site had a edit feature!

                              • June 26, 2015 at 11:05 pm
                              BrianP
                              Participant

                                "your" immune system not "you're" immune system.  Man I wish this site had a edit feature!

                                • June 26, 2015 at 10:53 pm
                                BrianP
                                Participant

                                  Wish they were better but those aren't bad odds Artie.  I've also always have been a believer in the cumulative effects of treatments.  With all you've been through and tried you sure would think you're immune system is "primed" for the payoff punch with TIL.  Really hope it works out that you can get the treatment.

                                  Brian

                                   

                                  • June 26, 2015 at 10:53 pm
                                  BrianP
                                  Participant

                                    Wish they were better but those aren't bad odds Artie.  I've also always have been a believer in the cumulative effects of treatments.  With all you've been through and tried you sure would think you're immune system is "primed" for the payoff punch with TIL.  Really hope it works out that you can get the treatment.

                                    Brian

                                     

                                  • June 26, 2015 at 2:18 pm
                                  arthurjedi007
                                  Participant

                                    Ok my speculation was wrong. The blood and tumor testing is for various antigens. If that testing comes back positive then they have other trials they could do. But she said so far they haven't had as much success with those yet. Since they came back negative all they have is TIL. She said that they have roughly a 40 to 50% response rate. Of those who respond about 20% give or take a few percent are cured and usually durable for years.

                                    Artie

                                    • June 26, 2015 at 2:18 pm
                                    arthurjedi007
                                    Participant

                                      Ok my speculation was wrong. The blood and tumor testing is for various antigens. If that testing comes back positive then they have other trials they could do. But she said so far they haven't had as much success with those yet. Since they came back negative all they have is TIL. She said that they have roughly a 40 to 50% response rate. Of those who respond about 20% give or take a few percent are cured and usually durable for years.

                                      Artie

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