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TIL Trial for Brain Mets – FYI and Q&A

Forums General Melanoma Community TIL Trial for Brain Mets – FYI and Q&A

  • Post
    OnJnAnT
    Participant
      Hi All!

      I’ve noticed that there is not a ton of information on these boards from folks who have been treated with TIL. For those who may want to know what the experience is like, I’m going to share mine.

      I am participating in the following trial at Memorial Sloan Kettering in NYC: Pilot Trial of Autologous Tumor Infiltrating Lymphocytes (LN-144) for Patients With Asymptomatic Melanoma Brain Metastases (NCT05640193). Although the trial is limited to those with asymptomatic brain metastases, the treatment is almost identical to the Lifileucel TIL therapy from Iovance that has been approved for expanded access by the FDA and which has previously excluded those with active CNS involvement.

      Background
      I was diagnosed Stage 3a in December 2019. I got adjuvant nivo for a year, and remained clear until January 2021, when I progressed in my lung and groin. I did 4 rounds of pembro/low-dose ipi and did not respond. A month later I was thrown off the expanded access TIL trial because of brain mets, which I quickly treated with SRS. After the radiation, I noticed immune side effects (vitiligo, arthritis), and the ground lymph node shrinked. A scan a month later showed almost complete resolution of the existing tumors.

      Unfortunately, my three month scans showed one new brain met and several other new subcutaneous lesions. My oncologist at Hopkins (Evan Lipson) immediately referred me to MSK, where this trial was pending approval. It is hard to consider myself “lucky”, but I definitely feel fortunate to have gotten into this when I did, and to have my fact pattern (one, small low-risk untreated brain met). Based on recent data, the docs have quoted a 30% response rate, with a decent chance to “hit a homerun”.

      My experience so far
      I’m currently sitting in my hospital bed, having just been checked into MSK. I had tumors harvested from subcutaneous lesions in my thighs on December 13th from which Iovance is harvesting and growing my TIL. My initial Baseline testing was November 28th, and my second Baseline testing was January 8th. My wife has relocated from DC and is staying nearby, as I’m required to have a caregiver close at all times.

      Tomorrow I’ll get my first dose of the preparatory chemo, which I’ll receive for 7 days total. On day 8 I’ll get the TIL cells. On days 9-11 I’ll receive up to 6 doses of IL-2. I’m required to remain in the hospital for a minimum of three weeks, after which I’ll be moved to MSK apartments a few blocks away where I’ll stay for another 16 days or so. I’m very fortunate to have family to help with my two kids and good health insurance.

      I’ll continue to post about my experience every now and then, but also will check in to see if anyone has questions.

      Jeff

    Viewing 7 reply threads
    • Replies
        JudiAU
        Participant
          Thanks this is really helpful.
          Bubbles
          Participant
            Thanks for sharing, Jeff. IL-2 is not for the faint of heart! Wishing you my very best with fingers crossed that all things go as well as possible with great results!!

            Celeste

            ed williams
            Participant
              Jeff, I hope thinks go smoothly and you get lot’s of T-cells ready for action!!! This following article was published by Iovance at the ESMO conference in the fall of 2022 and published in early December of 2022 on the topic of IL-2 doses and responses based on how much patients could handle and I thought it might be worth a read for you and maybe a discussion with your medical team on the data. https://www.onclive.com/view/lifileucel-induces-response-in-metastatic-melanoma-independent-of-number-of-il-2-doses-received
              Mark_DC
              Participant
                Jeff, good luck and thanks very much for posting
                Your clear explanation will benefit many of us
                Thank you, I really hope it works well
                Mark

                PS I have met Evan Lipson a couple of times, he was my second opinion doctor, and both times he was great. His advice the second time round caused my doctors to rethink – we finally gave the TVEC option a chance (not easy to find someone to administer though) and it helped me respond. Am very grateful to him.

                OnJnAnT
                Participant
                  Hey all, thanks for your encouragement!

                  Well things got off too a rocky start. The first dose of chemo (cyclophosphamide) took a toll. That plus not stress dosing my hydrocortisone (adrenal-insufficient) led to the brain met bleeding. My wife was my champion while I was in the throes of headaches, nausea, lethargy and utter brain fog on Friday and into Saturday morning. I am to be tapered on dexamethasone through wednesday and then a stress dose of twice my daily replacement dose of hydro until i’m out of the danger zone.

                  I’m still recovering from the brain fog and am searching for words. But each day brings improvement. The headache, nausea, and nausea are long gone thanks to some dex and sodium.

                  I haven’t missed dose of chemo, am still scheduled to get the TIL Friday after consultation with the trial onc, neurosurgery, neurology, endocrinology….the list is too long. I’ve received excellent care, but nothing replaces a good advocate.

                  OnJnAnT
                  Participant
                    Celeste – I’ve been warned about IL-2, but have been told that some react strongly to it and some brush it off. There is no rhyme or reason. Thanks for all you do.

                    Ed – Yes Dr. Betof told me about this. That is why she is willing to skip a dose or pull the plug on IL-2 if I have a strong reaction. Thanks for pulling the data to support that assertion!

                    Mark – Yes Dr. Lipson has been my hero (him and is NP Megan). I’m also from DC and visit him at Sibley on Thursdays!

                    Mark_DC
                    Participant
                      Hi Jeff – sounds terrible but glad that it seems you are recovering. No idea it would be as tough as this. I just logged in by chance and saw you had posted.
                      I live in DC near the Cathedral – I was treated at Georgetown by Geoff Gibney, he recommended Evan Lipson for second opinions when things were not working and we needed new plans, he recommended adding TVEC to the pembro, and my hero is Dr Rapisuwon at Washington Hospital Centre who made this treatment possible (others didnt want to bother to set it up) (and Dr Boisvert who injected me every two weeks). Dr Lipson always explained clearly and with respect. I dont think he knows his ideas might have saved my life.
                      Your path sounds tough but I hope it works.
                      Happy to meet in DC when you get back!
                      Best wishes Mark
                      gopher38
                      Participant
                        Also wanted to say thanks for posting your experiences. Hope you get an excellent response.
                    Viewing 7 reply threads
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