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Any experience with TIL clinical trials, is it worth considering ???
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Any experience with TIL clinical trials, is it worth considering ???

› Forums › General Melanoma Community › Any experience with TIL clinical trials, is it worth considering ???

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    • September 4, 2020 at 5:24 pm
    LH2000
    Participant
      My wife is stage IV for last 22 months. NRAS mutation. Many therapies (6) have been tried with some mixed results, but some grade 2-3 Adverse Events and now some continued progression. Tried Ipi/Nivo, Nivo solo, Ipi solo, Trametinib solo, Olaparib solo, Binimetinib + Ribociclib. Time for a clinical trial. Had 2nd opinions at MSK, MDA and Moffitt. Going to work w/ Dr. Khushalani at Moffitt in Tampa. Debating whether to do TIL (Tumor Infiltrating Leucocyte, Adoptive Cell Therapy) vs. another type of targeted chemo (Ceritinib + Trametinib).

      1. How successfully is TIL? We’ve heard at may be as low as 30% or as high as 50%…….
      2. How hard is it to do the TIL therapy? How long in the hospital and how traumatic is it? Sounds pretty tough when they use heavy IL-2 etc to essentially get rid of the “old” immune system so that a “new” immune system to better fight the cancer is pumped back into you.
      3. Any other advice or insights on options, especially for NRAS which doesn’t seem to be able to be targeted directly?

      Thanks!

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    • Replies
        • September 4, 2020 at 7:13 pm
        Bubbles
        Participant
          This post may interest you. It includes a couple links to prior posts re TIL (with the first giving an explanation of the process) as well as more recent articles: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/08/til-act-for-melanoma-patients-past-and.html

          Here are all the reports that I have re NRAS generally: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=NRAS

          Unfortunately, your wife has tried most of what is covered in these reports. However, it doesn’t seem as though she has not tried ulixertinib (BVD-523) – an ERK inhibitor. Here is what I have on those:
          https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=ERK+inhibitor

          There are trials that are recruiting patients for various studies using ulixertinib. Here is what is listed at Clinicaltrials.gov: https://clinicaltrials.gov/ct2/results?term=ulixertinib

          I honestly don’t know enough about it to say that I recommend it. But, if you are interested it may be one more option to discuss with your wife’s doc. I wish you both my best. Celeste

            • September 4, 2020 at 9:36 pm
            LH2000
            Participant
              Thanks, Celeste, you are amazingly helpful to all of us on this challenging journey! I really appreciate all that you do, your quick responses and great help accessing new critical info is a HUGE HELP!

              All the best,
              Larry and Jean

              • October 7, 2020 at 9:02 pm
              chipgoodhue
              Participant
                Larry:

                My wife Rose just started the lymphodeletion phase of the Iovance LN144/145 Trial at SCCA in Seattle under Sylvia Lee. I believe this trail is still recruiting.

                Rose failed Nivo and Ipi/Nivo, and Braf/MEK about put her out for good.

                The results from the prior Ln1444 trial were very promising. However, the trail is really rugged, knowingly needing a hospitalization for up to 3 weeks, including ICU time, is hard on the spirit. It’s her best hope and she has gone into it bravely.

                Will post of her progress.

                Chip

                • September 5, 2020 at 9:43 am
                KevinAffog
                Participant
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