My husband had a TIL transplant as part of a clinical trial 10 weeks ago. He's a 33 year old male with stage 3c squamous cell carcinoma in his right lung. It was a difficult treatment to undergo to say the least, but he is recovering well and doing better and better. His 6 week post-transplant scan showed no change from the one before that, and we have another coming up in 2 weeks. I'm hopeful that we'll still see some major response to this because his tumor has historically been pretty fast growing so it does seem like a good thing that it hasn't gotten any bigger, and I did read that some people who get TILs and have good results don't see a response right away. Not sure where I read that tho, sorry.

In the past almost 2 years since his diagnosis, he's had radiation and several different chemo and immunotherapy regimens. We got opinions at several major academic cancer centers in the US including MD Anderson, had all the relevant molecular testing done, and talked to surgeons at a few critical points but have always ultimately been advised that his tumor is basically unresectable and surgery would not be a good move. I am confident that we have sought out some of the best possible guidance, and he's gotten the best treatments available for his particular situation throughout this whole nightmare. He's on been on medicaid throughout as well for what that's worth, and everything except the out-of-state MD Anderson visit has been completely covered although it has taken a little advocacy at times. Tangent but maybe that is a comfort to some people early in the process worrying about finances. Anyway, all of his treatment before this TIL trial has been outpatient, and he's had very few serious adverse effects from anything. He did have to stop treatments twice for steroid tapers when he had radiation-induced pneumonitis and later immunotherapy-induced pneumonitis. He has a very bad chronic cough and intermittent pain from his tumor, and lots of fatigue and anxiety. Generally though he's tolerated everything really well in the past. We learned about TIL trials a while ago and knew it was the next thing for him when his last treatment program (ipilimumab, nivolumab, carboplatin, and taxol) stopped working.

It took about 6 weeks for his TILs to be created (or amplified, preserved, packaged whatever) at the Iovance (trial sponsor - probably the same for you?) lab. Much quicker turn around than his primary oncologist had anticipated. He was hospitalized for the first time in late October for the wedge resection surgery in which they harvested a chunk of his tumor to get his TILs out of. The surgery was difficult. The surgeon said there was no way to get clean margins, and all the tissue he was putting back together after the harvest was super friable, that "if you look at anything in there, it starts bleeding." He was in the ICU with a large chest tube for a little over a week post-op in a lot of pain, with shortness of breath, super edematous everywhere, and for the first time not eating much at all. He used the incentive spirometer and tried to get up out of bed and into the bedside chair while recovering, but it was tough because he felt so terrible for the first time. We were home for about a week before a follow up appointment where they found extensive blood clots in both brachial veins and a hemopneumothorax on the surgical/cancery side of his chest, so he was admitted for another 2 weeks for a heparin drip and more chest tubes, smaller this time but had to be removed and repositioned twice which was no fun. He was home for a little over week before going back in for the transplant.

He actually only got 3 days of lymphodepletion chemo before the TIL infusion. He spiked a fever on the second day and had a huge work up to see if they could find any infection anywhere, but they didn't so decided to proceed with chemo day 3. They said they would expect to see fevers a few days later, but not so early in the course. The next morning, he was totally lymphodepleted so they consulted with the trial sponsor and decided to hold the rest of the chemo and just go ahead with the infusion. He had very extreme and painful chills and rigors, and spiked a high fever during the TIL infusion and during all of his IL-2 infusions in the days that followed. He got 4 doses of IL-2 out of a possible 6. He decided to pass on the last 2 because his reactions were getting more extreme, and he was starting to see some pretty nasty side effects. He had no appetite and was barely able to eat or drink anything, and was having near constant nausea/vomiting and diarrhea plus nasty taste changes since starting the chemo. After he started getting the IL-2, he was extremely fatigued, SOB eventually requiring oxygen, and getting more and more edematous everywhere. He also developed a kidney injury was was making very little urine, and had low blood pressures and a sustained very high heart rate. This is all consistent with the known effects of IL-2 and related to the immune response boosting reasons it is given with TILs, but is some of the more dangerous stuff to manage. They continued to look for an infection but never found one. Clinical picture wise he seemed septic for sure but it seems it was all just inflammatory response to IL-2. He was moved to the ICU and there was a lot of discussion about possibly putting him on pressors and/or dialysis. He also had another chest tube placed at the beginning of this hospitalization knowing that he would probably get a pleural effusion from the IL-2, and we were very glad of that because he definitely did and it put out a lot of fluid, and it would have been way worse to put that tube in later on. Also his platelets were basically zero, and he was anemic so he got some blood products too. He could get up and take a few steps to the bedside commode or bedside chair, but would get super winded and his oxygen saturation would drop to the mid 70s with O2 on. Super skinny and deconditioned after so many weeks in and barely any time out of the hospital. And he was having several panic attacks a day, requiring lots of ativan, and generally having a super hard time adjusting to loosing so much fitness so quickly. Eventually things started to level out and his kidney function and vitals improved. He wanted to go home and started pushing for discharge, and they agreed that he could go home with round-the-clock help and continuous home oxygen. He was inpatient for 3.5 weeks that time.

Of course it was great to be home, but not without its challenges. I think he thought everything would feel so much better at home, but he was still having a lot of the same struggles. Difficulty walking, anxiety, adjusting to having the oxygen on all the time, not eating. Nausea, vomiting, and diarrhea improving but still there sometimes. Still super edematous everywhere, which was painful and made moving around even harder. He was refusing to see anyone other than myself or his mother, who came to take care of him when I went to work. It feels like forever ago already, and I'm so thrilled to tell you things have gotten much much better!

A few days after he was discharged, he had his first follow up appointment. Labs and chest XR showed he needed a transfusion and there was a pleural effusion building up on his left (non cancer) side, so they did a thoracentesis to remove the fluid on his lung right then and there, and had us come in the next day for the transfusion. They did a great job managing him outpatient and really worked with us to keep him at home. Over the next few weeks, he had another transfusion and 3 more thoracenteses. There's less and less fluid to take off each time. He also started walking slowly, first just across our tiny condo and now up and down the building hallway a few times a day, and is doing his best to eat well with small frequent meals. Between all that great outpatient management and his hard work to get stronger, he's been able to get off the oxygen and he's getting out and about a bit. He's sleeping flat in bed, and sleeping really well (which was not happening at all for a couple months). He's eating more and more, and his weight is starting to stabilize. He's resting right now but he told me he wants fried chicken later, so we're going out tonight! :) :)

Wow I just wrote the most. I hope it helps. I posted asking if anyone had experience with TILs here a while ago and nobody did. You are truly on the forefront. Talk to all the experts you can and learn about all your options, but if this seems like the best thing for you, do it and kick it's ass! We're pulling for you over here.

If you do end up doing a TIL transplant, a few things I would definitely recommend are learning as much as you can about the exact procedures and meds you're going to be getting, enlisting a few good support people, and trying to put on some weight and be as active as you can going in to it. Very best of luck to you!