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TIL Trial Experiences?
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TIL Trial Experiences?

› Forums › Cutaneous Melanoma Community › TIL Trial Experiences?

  • Post
    • March 7, 2019 at 7:48 pm
    waynec
    Participant

      Hello folks,

      I've been on this board for a while but have not posted until now. I'm a candidate for a TIL trial and I was looking for people that have been through it to share their experiences with me. I'm not definitely in yet, still need brain MRI and a couple of other tests but the PI says she expects me to get in. It's an Iovance-sponsored study being run by Dr. Phan, who worked with Dr. Rosenberg at NIH for years. 

      I'd love to hear from anyone who has been through this about what to expect and how to prepare.

      A brief history:

      Diagnosed March 2015 melanoma of scalp

      WLE April 2014

      In-transit mets appeared August 2015

      42 infusions of Keytruda 9/2015 – 1/2018- seemed to work, until it didn't. 

      3 infusions of Yervoy 8/2018, until grade 3 GI side effects made us stop. A bunch of prednisone and one infusion of Remicade finally fixed that.

      I currently have eight confirmed or suspicious sites in various locations, all cutaneous or just sub-Q. I've never shown an internal met on any scan.  Final tests and scans for the trial scheduled for 3/15, surgery for 3/19. 

      Anyway, I'd love to hear from folks who can give me the benefit of experience in this process. I'm optimistic but kind of anxious as well.

      Thanks!

      Wayne

       

       

    Viewing 1 reply thread
    • Replies
        • March 8, 2019 at 1:46 am
        BrianP
        Participant

          Wayne,

          Hopefully you'll get a few replies soon with some good recent experience.  Have you tried the search feature on the forum?  I just did a search for "TIL experience" and found a few threads.  Good luck getting in the trial.  Sounds like a great option.

          Brian

            • March 8, 2019 at 4:54 pm
            waynec
            Participant

              Good suggestion, thanks!

              • March 9, 2019 at 12:08 am
              Gene_S
              Participant
                • March 9, 2019 at 12:11 am
                Gene_S
                Participant

                  immunotherapy– spelled it wrong sorry

                  • March 9, 2019 at 1:43 am
                  Bubbles
                  Participant

                    Really, CP????

                    • March 9, 2019 at 2:19 pm
                    waynec
                    Participant

                      Sorry, I'm not sure I understand… For one thing, TIL is an immunotherapy.  For another, two other different immunotherapies have not worked for me (Keytruda and Yervoy), so this is my next option. Can you explain what you mean? 

                      • March 9, 2019 at 3:24 pm
                      ed williams
                      Participant

                        Hi Wayne, I think but I am not 100% that Anon works for Melanoma International which is another melanoma web page (not very popular). The person probably didn't read your post or doesn't understand your current situation. TiL's as you are probably quickly finding out is no one's first choice due to the chemo depletion part at the beginning (pretty tough). There have been many on the MRF forum that have either done TiL's or had tumor harvested for future need. Best Wishes with treatments!!!Ed

                        • March 9, 2019 at 3:40 pm
                        ed williams
                        Participant

                          Wayne, here are two links if you are interested. The first one is Catherine Poole and her opinion of TIL's (lady who runs Melanoma International the likely "Anon") compare that to the second link which features the man who kind of invented the process at the NIH Dr. Rosenberg. I haven't tried the procedure so I will leave my personal opinion out of the post. https://melanomainternational.org/2015/05/til-therapy-for-melanoma-magic-bullet-or/#.XIPcrihKg2w                                                                        https://www.youtube.com/watch?v=_Xc7e7No4hQ

                          • March 9, 2019 at 3:44 pm
                          Bubbles
                          Participant

                            What Ed said!!!!  I haven't had TIL either, Wayne….but if I were in your shoes or had the need….I would certainly give it a try!!  I wish you my best!  Keep us posted.  Celeste

                            • March 12, 2019 at 3:57 pm
                            waynec
                            Participant

                              Thank you Ed and Celeste. Very helpful. Best wishes to you. -Wayne

                            • March 8, 2019 at 3:17 pm
                            mrsaxde
                            Participant

                              Hi Wayne,

                              I did the TIL trial at NIH last year. It got me to stable for about 8 months, then things started growing again. Here are some of my experiences.

                              As far as preparation, I'd say the best you can do is make sure you eat to keep your weight up. Your weight will likely increase, then decrease during the trial.

                              Out of the approximately four weeks, there's going to be a little more than a week of pure hell. Cyclophosphamide is not fun in and of itself — have an emesis basin handy. But for 48 hours while you get it, you're going to have to get up to pee every two hours, even through the night. The other three days of chemo, where you will only get fludarabine, won't be as bad.

                              After a little rest from that, you'll get your cells and IL-2. I only managed 4 doses of IL-2 before they stopped. My lungs were accumulating fluid and my doc was afraid I'd wind up in the ICU. I was on supplemental oxygen for most of the time I received IL-2.

                              When the IL-2 is done, things get better rapidly. At that point it's rest and recovery until your blood counts come back up. Then you get to go home and hope it works!

                              Let me know if there's anything I've touched on, or something I haven't mentioned, that you want to know more about. Good luck!

                              -Bill

                                • March 8, 2019 at 4:56 pm
                                waynec
                                Participant

                                  Thank you Bill, this is great and confirms what I have heard so far. I will certainly let you know if/when I have more questions!  Best, Wayne

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