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A little encouragement from a 7 year stage 4, TIL, Rad, Chemo, Immuno, survivor.

Forums General Melanoma Community A little encouragement from a 7 year stage 4, TIL, Rad, Chemo, Immuno, survivor.

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      It’s been a while since I posted here, but I know how much encouraging stories can help us out, so I’d like to update ya’ll.

      I was diagnosed Stage 3 with a deep tumor with no useful mutations 7 years ago. It was in one lymph node. I was in my early 30s. I did Nivo for a year or so, having a few local recurrences, and received radiation there too.

      After around 15 months, it had spread to my liver and lungs. I started IPI/NIVO, which worked on my liver, but not on my lungs. I started looking for trials and second opinions at this point and moved my care to MDAnderson.

      After a couple months break, I did another full round of IPI/NIVO and again received radiation to a tumor near my spine in my abdomen. I switched back to Nivo and did that for another two months until I started the NKTR trial. I had a lot of difficult side effects with that one, but I kept it up for 7 months until I had some progression. I got started on a TIL trial, having my cells harvested and unfortunately for me, TIL was delayed indefinitely because of COVID and other complications. So I did IPI/NIVO for 3 cycles, but wasn’t able to get all 4 this time because of toxicity problems. Afterwards, I continued on Nivo until I had progression in June 2021, when I started looking for yet another trial.

      At this point I was bouncing between 4 different hospitals trying different treatments and trials. I did a first in human trial this time using Brentuximab and Pembro. The drugs were used before, but not in this way for melanoma. It was mildly successful, keeping me stable for eight months or so, but I again had many side effects. After a break recovering from that trial, Opdualag was approved for standard care, so I started up on that. I was the first patient at Vanderbilt so there were some hoops to jump through, but it worked well at keeping me stable, but then I got word that the thing I’d been waiting on for years was finally available. TIL was operating again and I got in the queue as quickly as I could at MDA.

      If you are considering doing TIL, I assume that means you’ve tried other options and you need a heavy hitter. You’re probably nervous about the whole process, but based on my experience, it’s not that bad. Of course it’s no walk in the park. For me, I did have rigors, and they weren’t fun, but I managed to treat them pretty successfully with Demerol and lots of warm blankets. They had to give me the Demerol about 30 minutes after receiving the IL2 infusion and then they had to cocoon me with a half dozen warm blankets right when the chills started and that mostly controlled the shaking. After about 45 minutes, the rigors had stopped and I had to get those blankets off because I was burning up. The hardest part for me was staying in the hospital room so long on those uncomfortable beds, and also knowing that I’d have to do it all again a few hours later. You can do it though.

      I did the TIL and then had to do scans to see what it did and I was gutted. This was two weeks after finishing the TIL. I had my first tiny brain lesion. I still had to recover from the TIL treatment so I couldn’t do anything at that moment other than wait and have more scans, which showed more growth. I should have listened to my doctor who told me those scans were too soon after the TIL to really see the effects, so I shouldn’t be too worried, but even still we planned the appointment gamma knife. I started back on the Obdualag and a little over two weeks later went back for my gamma knife operation. My doctor was right. As they were planning the exact GK treatment approach, we discovered that the brain met had shrunk to a tiny size and no longer needed treating! The follow up scans since then have shown all tumors have shrunk and calcified and the brain met is non existent. I have had no progression for a little over one year now. There have been a few small hiccups I’ve had to deal with since then. My TIL hospitalization gave me extreme dry mouth, eyes, and skin. The dry mouth caused cavities to develop inside two molars, so I had to get crowns. Keep a close watch on your teeth and try to avoid dryness, because those cavities developed internally just because of the dryness. There was no external decay so an XRay had to find it. I also had some eye problems that I’m dealing with, that are likely not permanent, but will probably continue while I’m on Opdualag, which will probably be one more year.

      So that’s my story so far. Hopefully it’s encouraging to any of you still looking for treatments. My primary advice is be your own advocate. Most doctors have been very helpful and take initiative, but sometimes you just have to take the initiative yourself. Don’t sit back and just let the doctor tell you what to do while you are just along for the ride. Ask questions. Give your own ideas and opinions. Try to learn something about your treatments. Good luck!
      P.S. The Serenity Prayer is very appropriate for cancer patients too.

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          Excellent words of advice, Billy. So glad to hear that you are doing so well!!! Enjoy! celeste
          ed williams
            Billy I am exhausted just reading that adventure, you have more than earned some time off from treatments. When are you writing the book version of this adventure, so many state 4 folk are looking for advice on TIL’s these days you should think of putting out a more detailed version of the process you went through!!!
              Thanks Celeste and Ed. That’s actually something I’ve thought about regarding TIL. I didn’t feel like there was much info out there when I was looking a while back. Maybe I will put that together
                Excellent reading and encouraging. Thank you.
                  Thank you a lot for sharing. I hope the TIL continues to keep you strong. Weirdly enough I shared many of these experience through my prior brain tumor journey, prior to melanoma. Dry eye and mouth from nerve damage and terrible shaking from sepsis once and immunotherapy fevers another time. You have my utmost sympathy.
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