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Home from IL-12 TIL treatment at NIH

Forums General Melanoma Community Home from IL-12 TIL treatment at NIH

  • Post
    Angela C
    Participant

      Hi everyone.

      Hi everyone.

      I got home yesterday after three weeks at NIH for IL-12 TIL treatment. Everything went really well. I had a week of chemo, followed by cell infusion then about two weeks in-patient while they monitored me for any side effects. I had a lot of fevers, some pretty high – 103-104. The doctors think things look good and they were able to see levels of IL-12 and interferons in my blood. My TIL cells were very active and grew extremely well in the lab. They are supposed to continue to multiply in my body and release IL-12 as they encounter Melanoma cells and kill them. I go back in about three weeks for my first follow up scans.

      I'll let you guys know what scans show next month. I'm feeling very hopeful. They have seen results in almost all of the patients in the higher doses. I had one billion cells put back in my body. I'm in the 9th cohort out of 12.

      ~Angela

    Viewing 23 reply threads
    • Replies
        TSchulz
        Participant

          Angela,

          I'm sure you are so happy to be home after such a long hospitalization.  Congratulations and good luck with the follow-up scans.

          I am heading out to NIH next week for what is supposed to be my randomization visit for the TIL vs TBI +TIL trial and although nervous about it all I'm excited to get going. 

          I, too, am expecting to be hospitalized for 3-4 weeks in late May and will have family with me – daughter (2), wife and parents off and on.  I'm wondering if you have any tips to offer on how to manage their time out there?  Lodging, Food, Entertainment?   If you have the time and energy would you mind replying to me at [email protected].  Thank you.

          Best, Troy

          TSchulz
          Participant

            Angela,

            I'm sure you are so happy to be home after such a long hospitalization.  Congratulations and good luck with the follow-up scans.

            I am heading out to NIH next week for what is supposed to be my randomization visit for the TIL vs TBI +TIL trial and although nervous about it all I'm excited to get going. 

            I, too, am expecting to be hospitalized for 3-4 weeks in late May and will have family with me – daughter (2), wife and parents off and on.  I'm wondering if you have any tips to offer on how to manage their time out there?  Lodging, Food, Entertainment?   If you have the time and energy would you mind replying to me at [email protected].  Thank you.

            Best, Troy

              Rebecca and Bob
              Participant

                Troy,

                 

                Not to answer for Angela, but there is a family lodge on site called the Edmond J. Safra Family Lodge on campus. If you talk to your coordinator or clinical nurse they should be able to lead you in the right direction on having family stay there if there is room. It's beautiful and my husband's parents stayed there when he was getting treatment.

                Here is the link http://clinicalcenter.nih.gov/familylodge/ .

                Good Luck,

                Rebecca

                 

                Rebecca and Bob
                Participant

                  Troy,

                   

                  Not to answer for Angela, but there is a family lodge on site called the Edmond J. Safra Family Lodge on campus. If you talk to your coordinator or clinical nurse they should be able to lead you in the right direction on having family stay there if there is room. It's beautiful and my husband's parents stayed there when he was getting treatment.

                  Here is the link http://clinicalcenter.nih.gov/familylodge/ .

                  Good Luck,

                  Rebecca

                   

                  Rebecca and Bob
                  Participant

                    Forgot to mention it is free, which is very helpful when your going through all of this.

                     

                    Rebecca

                    Rebecca and Bob
                    Participant

                      Forgot to mention it is free, which is very helpful when your going through all of this.

                       

                      Rebecca

                      TSchulz
                      Participant

                        Thanks Rebecca, I do know about the lodge but have been led to believe it is not always availabe due to high demand.  I am hoping my famiiy gets to utilize it but also want to be prepared for a plan B. (The melanoma patient in me…) All info is helpful and welcome.  Thanks again,  Troy

                        TSchulz
                        Participant

                          Thanks Rebecca, I do know about the lodge but have been led to believe it is not always availabe due to high demand.  I am hoping my famiiy gets to utilize it but also want to be prepared for a plan B. (The melanoma patient in me…) All info is helpful and welcome.  Thanks again,  Troy

                          TSchulz
                          Participant

                            Thanks Rebecca, I do know about the lodge but have been led to believe it is not always availabe due to high demand.  I am hoping my famiiy gets to utilize it but also want to be prepared for a plan B. (The melanoma patient in me…) All info is helpful and welcome.  Thanks again,  Troy

                            Rebecca and Bob
                            Participant

                              Forgot to mention it is free, which is very helpful when your going through all of this.

                               

                              Rebecca

                              Rebecca and Bob
                              Participant

                                Troy,

                                 

                                Not to answer for Angela, but there is a family lodge on site called the Edmond J. Safra Family Lodge on campus. If you talk to your coordinator or clinical nurse they should be able to lead you in the right direction on having family stay there if there is room. It's beautiful and my husband's parents stayed there when he was getting treatment.

                                Here is the link http://clinicalcenter.nih.gov/familylodge/ .

                                Good Luck,

                                Rebecca

                                 

                              TSchulz
                              Participant

                                Angela,

                                I'm sure you are so happy to be home after such a long hospitalization.  Congratulations and good luck with the follow-up scans.

                                I am heading out to NIH next week for what is supposed to be my randomization visit for the TIL vs TBI +TIL trial and although nervous about it all I'm excited to get going. 

                                I, too, am expecting to be hospitalized for 3-4 weeks in late May and will have family with me – daughter (2), wife and parents off and on.  I'm wondering if you have any tips to offer on how to manage their time out there?  Lodging, Food, Entertainment?   If you have the time and energy would you mind replying to me at [email protected].  Thank you.

                                Best, Troy

                                Phil S
                                Participant
                                  Angela, Great news on getting thru the hospital phase of this TIL trial.What a wonderful accomplishment, now you can relax and let the T cells fight those melanoma cells. What did you mean by seeing results in almost all patients in the higher doses? Higher doses of what? My husband is beginning a TIL trial in Houston next week and I know they run the trials a little different, but was just curious. Positive thoughts for great scans for you,God Bless, Valerie (Phil’s wife)
                                  Phil S
                                  Participant
                                    Angela, Great news on getting thru the hospital phase of this TIL trial.What a wonderful accomplishment, now you can relax and let the T cells fight those melanoma cells. What did you mean by seeing results in almost all patients in the higher doses? Higher doses of what? My husband is beginning a TIL trial in Houston next week and I know they run the trials a little different, but was just curious. Positive thoughts for great scans for you,God Bless, Valerie (Phil’s wife)
                                      Angela C
                                      Participant

                                        Hi Phil.

                                        The IL-12 TIL trial is a dose escalation trial. So, every three patients, they increase the amount of your T-Cells that they are putting in your body. So, for my cohort, they grew my cells until they had one billion of them to put back in my body. Earlier patients had lower doses of their cells put back in. As the amount of cells has increased, they have been seeing better results.

                                        In standard TIL, I think they usually grow as many of your cells as they can and aim for giving you 40-60 billion of your cells back. So, the IL-12 TIL is a little different because they genetically alter the T-Cells to express IL-12 and have found that they don't have ot put as many cells back in the body to see results.

                                        Best of luck to your husband and his TIL trial! It's a very exciting treatment to have something made specifically for you!

                                        ~Angela

                                        Angela C
                                        Participant

                                          Hi Phil.

                                          The IL-12 TIL trial is a dose escalation trial. So, every three patients, they increase the amount of your T-Cells that they are putting in your body. So, for my cohort, they grew my cells until they had one billion of them to put back in my body. Earlier patients had lower doses of their cells put back in. As the amount of cells has increased, they have been seeing better results.

                                          In standard TIL, I think they usually grow as many of your cells as they can and aim for giving you 40-60 billion of your cells back. So, the IL-12 TIL is a little different because they genetically alter the T-Cells to express IL-12 and have found that they don't have ot put as many cells back in the body to see results.

                                          Best of luck to your husband and his TIL trial! It's a very exciting treatment to have something made specifically for you!

                                          ~Angela

                                          Angela C
                                          Participant

                                            Hi Phil.

                                            The IL-12 TIL trial is a dose escalation trial. So, every three patients, they increase the amount of your T-Cells that they are putting in your body. So, for my cohort, they grew my cells until they had one billion of them to put back in my body. Earlier patients had lower doses of their cells put back in. As the amount of cells has increased, they have been seeing better results.

                                            In standard TIL, I think they usually grow as many of your cells as they can and aim for giving you 40-60 billion of your cells back. So, the IL-12 TIL is a little different because they genetically alter the T-Cells to express IL-12 and have found that they don't have ot put as many cells back in the body to see results.

                                            Best of luck to your husband and his TIL trial! It's a very exciting treatment to have something made specifically for you!

                                            ~Angela

                                          Phil S
                                          Participant
                                            Angela, Great news on getting thru the hospital phase of this TIL trial.What a wonderful accomplishment, now you can relax and let the T cells fight those melanoma cells. What did you mean by seeing results in almost all patients in the higher doses? Higher doses of what? My husband is beginning a TIL trial in Houston next week and I know they run the trials a little different, but was just curious. Positive thoughts for great scans for you,God Bless, Valerie (Phil’s wife)
                                            jim Breitfeller
                                            Participant
                                              Congrats!, seems to me that your engineered T cells are producing IL-12 and IFN-gamma which in turn is causing the differentiation of the T cells into TH1 phenotype.

                                              check my other posts with the engineer IL- 12 T cells
                                              Best regards ,
                                              Jimmy b

                                              jim Breitfeller
                                              Participant
                                                Congrats!, seems to me that your engineered T cells are producing IL-12 and IFN-gamma which in turn is causing the differentiation of the T cells into TH1 phenotype.

                                                check my other posts with the engineer IL- 12 T cells
                                                Best regards ,
                                                Jimmy b

                                                jim Breitfeller
                                                Participant
                                                  Congrats!, seems to me that your engineered T cells are producing IL-12 and IFN-gamma which in turn is causing the differentiation of the T cells into TH1 phenotype.

                                                  check my other posts with the engineer IL- 12 T cells
                                                  Best regards ,
                                                  Jimmy b

                                                  Rebecca and Bob
                                                  Participant

                                                    Angela,

                                                    Wishing you the best news in 3 weeks! Thank you for sharing this information they are always changing and doing something new at NIH. My husband did IL-2 there and surgery and he is followed by them, we think very highly of what they are doing there. 

                                                    When my husband did IL-2 they also commented on some levels that rebounded in his blood and felt it was working. I don't know a lot about it but just wishing you the best.

                                                     

                                                     

                                                    Rebecca and Bob

                                                    Rebecca and Bob
                                                    Participant

                                                      Angela,

                                                      Wishing you the best news in 3 weeks! Thank you for sharing this information they are always changing and doing something new at NIH. My husband did IL-2 there and surgery and he is followed by them, we think very highly of what they are doing there. 

                                                      When my husband did IL-2 they also commented on some levels that rebounded in his blood and felt it was working. I don't know a lot about it but just wishing you the best.

                                                       

                                                       

                                                      Rebecca and Bob

                                                      Rebecca and Bob
                                                      Participant

                                                        Angela,

                                                        Wishing you the best news in 3 weeks! Thank you for sharing this information they are always changing and doing something new at NIH. My husband did IL-2 there and surgery and he is followed by them, we think very highly of what they are doing there. 

                                                        When my husband did IL-2 they also commented on some levels that rebounded in his blood and felt it was working. I don't know a lot about it but just wishing you the best.

                                                         

                                                         

                                                        Rebecca and Bob

                                                        aldakota22
                                                        Participant

                                                            Happy for the good news.Know you have been through a lot  and you are glad to be home.Now your body will wage the battle in familiar terriority.Praying that your scans will be as good as it gets.    Al

                                                          aldakota22
                                                          Participant

                                                              Happy for the good news.Know you have been through a lot  and you are glad to be home.Now your body will wage the battle in familiar terriority.Praying that your scans will be as good as it gets.    Al

                                                            aldakota22
                                                            Participant

                                                                Happy for the good news.Know you have been through a lot  and you are glad to be home.Now your body will wage the battle in familiar terriority.Praying that your scans will be as good as it gets.    Al

                                                              triciad
                                                              Participant

                                                                Angela,

                                                                I am so hapy to hear your good news!  May this be the treatment that knocks the beast out of your body for good.  Keep us posted!

                                                                Tricia

                                                                triciad
                                                                Participant

                                                                  Angela,

                                                                  I am so hapy to hear your good news!  May this be the treatment that knocks the beast out of your body for good.  Keep us posted!

                                                                  Tricia

                                                                    NYKaren
                                                                    Participant
                                                                      Angela, it sounds amazing and hopeful. Please keep up posted and feel good while your body slays the beast!
                                                                      karen
                                                                      NYKaren
                                                                      Participant
                                                                        Angela, it sounds amazing and hopeful. Please keep up posted and feel good while your body slays the beast!
                                                                        karen
                                                                        NYKaren
                                                                        Participant
                                                                          Angela, it sounds amazing and hopeful. Please keep up posted and feel good while your body slays the beast!
                                                                          karen
                                                                        triciad
                                                                        Participant

                                                                          Angela,

                                                                          I am so hapy to hear your good news!  May this be the treatment that knocks the beast out of your body for good.  Keep us posted!

                                                                          Tricia

                                                                          JerryfromFauq
                                                                          Participant

                                                                            Sounds very good.  Awaiting results.

                                                                            JerryfromFauq
                                                                            Participant

                                                                              Sounds very good.  Awaiting results.

                                                                              JerryfromFauq
                                                                              Participant

                                                                                Sounds very good.  Awaiting results.

                                                                                hopefortomorrow
                                                                                Participant

                                                                                  So happy to hear you are doing well!  Keep up the fight.  My mom was scheduled for a clinical trial on IL-12 but, unfortunately, was disqualified due to mets to the brain.  She was so excited to be able to possibly help others in some way by trying new treatments for this terrible disease.  To all of you out there fighting with melanoma, I want you to know I count you among the bravest and strongest people in the world.  My mom's oncologist was very excited about  IL-12 and was very positive that it would be effective for many patients.  Remain hopeful and we will be looking forward to hearing your good news!

                                                                                  hopefortomorrow
                                                                                  Participant

                                                                                    So happy to hear you are doing well!  Keep up the fight.  My mom was scheduled for a clinical trial on IL-12 but, unfortunately, was disqualified due to mets to the brain.  She was so excited to be able to possibly help others in some way by trying new treatments for this terrible disease.  To all of you out there fighting with melanoma, I want you to know I count you among the bravest and strongest people in the world.  My mom's oncologist was very excited about  IL-12 and was very positive that it would be effective for many patients.  Remain hopeful and we will be looking forward to hearing your good news!

                                                                                    hopefortomorrow
                                                                                    Participant

                                                                                      So happy to hear you are doing well!  Keep up the fight.  My mom was scheduled for a clinical trial on IL-12 but, unfortunately, was disqualified due to mets to the brain.  She was so excited to be able to possibly help others in some way by trying new treatments for this terrible disease.  To all of you out there fighting with melanoma, I want you to know I count you among the bravest and strongest people in the world.  My mom's oncologist was very excited about  IL-12 and was very positive that it would be effective for many patients.  Remain hopeful and we will be looking forward to hearing your good news!

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