- August 11, 2021 at 11:34 am
So recently I went through the TIL thing. I’ve read a lot of notes about how the treatment is supposed to go, but there are very few actual accounts of someone going through it and what all the particulars are and what a patient can expect.
It starts with the resection of a tumor(s). Mine were harvested from my neck. There was plenty to pick from, but the surgeon decided against taking everything out he possibly could and lengthening my surgery recovery time, and focused on getting big pieces that Iovance could use to brew up their cell product. On the day of my surgery, they were in the OR to test the tissue, and it tested well, we thought everything was fine at that point.
The tissue goes off to Iovance for the TILs to be isolated and expanded. Everything looked good at the beginning, but at the end of two weeks, they didn’t have the amount of TILs that they normally have (or so we thought). However, the cell product passed the final potency test, and the IRB of the hospital approved their use. I was told later that there WERE indeed the right number of TILs, but that there were other cells growing in there as well. Again, I still need to see what exactly the deal was.
Once it was approved, they came up with an admittance date at the hospital. The first step is 24 hours of fluids, so on the day I showed up, my port was accessed and I was hooked up. Once they had my room open and cleaned, I moved up there, where I would spend the next 16 days.
After fluids, I started on the Cytoxan and Mesna. Cytoxan attacks your bladder specifically, and the Mesna protects it. So for two days, Cytoxan (chemo) and Mesna. Then 5 days of fludarabine. The purpose of the chemo is for lymphodepletion – labs were taken twice a day to monitor my blood counts and check to see if I was neutropenic yet. You are expected to be at the end of the 7 days of chemo, and I was.
The chemo wasn’t terrible, and the accompanying nausea was treated by a few different anti-nausea meds administered through the port. However, they strictly monitored my fluids – specifically, how much I was peeing. For the whole time, I peed in a urinal and the nurses measured my output. I believe the 24 hours of fluids are also to protect the bladder, as well as to keep you hydrated. It still affected my bladder ( I guess it was the chemo) as I was urinating every half hour at times.
Once chemo is done and you’re confirmed to be neutropenic, its Cell Day, referred to as day 0. I had 3 bags that came from Iovance. They come cryo-preserved and are warmed in warm water before being gravity dripped into you via the central line. I don’t think I had any side effects from the cells, and I don’t think many people do. The IL2 is a different story, however.
The cells go in in the morning/early afternoon. Then once they confirm that everything is good, IL2 starts that afternoon/evening. The target is 6 doses. One dose on day 0, two on day 1, two on day 2 and one on day 3. The purpose of the IL2 (which is naturally occurring in your body in smaller amounts) is sort of food for the TILs. It encourages the TILs to get to work on the disease. The target is indeed 6 doses, but one dose may be just as effective, they just don’t know.
The IL2 isn’t easy, but its do-able. For me, the hardest side effect was the rigors – uncontrollable shaking. It was managed with Demerol for me, though I don’t know how well. The IL2 was infused, and then the waiting started. Approximately an hour after the infusion is when my rigors started. We tried a number of things – pre-medicating with Demerol to try to head the rigors off, waiting for them to start and then treating, and both. I’m not sure if we found one way that was better than another. My wife was there for all 6, and she seemed to think that waiting for them to start and then hitting it with Demerol (which we did first) was the best, because my ‘episode’ was the shortest. However, it was the most intense, as I remember. The rigors were so intense that I found it difficult to breathe at times, because I couldn’t take a deep breath because of the shaking. But eventually the increasing doses of Demerol took hold and gradually they lessened and stopped. By the 6<sup>th</sup> dose of IL2, it was taking about an hour for the rigors to run their course, seemingly regardless of what we did with the Demerol. I was sorta just gritting my teeth and getting through it.
The rigors made me feel very cold, to the point where I would have 7 or 8 blankets on me. I knew they were done when I was sitting in bed in a sweat wondering why I had so many damn blankets on.
During the administration of the IL2, vitals were being taken every 2 hours, and labs 2-3 times a day. Also, while neutropenic, I was taking an oral anti-viral and antifungal. Once the IL2 was finished, I was also on IV antibiotics round the clock – two different kinds. I also needed two platelet transfusions and one transfusion for my hemoglobin, though they didn’t seem to think it was a big deal. However, I did need to be able to go two days without a transfusion before they’d consider me for discharge.
The IL2 turns your urine brown, plus there was a little blood in mine from the bladder inflammation. There were a few clots, as well. They scanned my bladder periodically to make sure I was emptying it, and I was. Just peeing a lot of disconcertingly colored urine with some clots.
A note on fluid – I gained a lot of fluid weight, as do most, because of the amount of IV fluids. My left arm was already swollen post surgery, I imagine because of the lymph nodes that were removed. They gave me Lasix twice to get the fluids out – which really turned the volume up on the peeing. It was every 10 minutes for a while, right after it was administered. After about an hour it started to slow down, but even when I was discharged, I was still peeing every hour. It’s gotten much better now a week and a half on.
After the IL2, its recovery time. The oral meds continued as did the IV antibiotics. I spiked a fever once, to 102.6. But this came down quickly and stayed down – once they confirmed that it would stay down without Tylenol, I was swapped over to an oral antibiotic and monitored. I was on that for the 2 days prior to my release. Once I was released, the oral meds were discontinued.
The physical part wasn’t easy, but it was certainly do-able. What I underestimated was the mental part of being in a hospital room for 16 days. Some may not have a problem with that aspect at all, however I found it very difficult to sleep and by the end the lack of sleep was getting to me, especially as I was feeling better. I was taking laps around the unit just for a change of scenery and to stop myself from counting the ceiling tiles. Again.
Once my white counts started to come back up, they started to consider me for release. Each doctor is different, as I learned. The normal range for your absolute neutrophil count is 1 to 11. Mine was a zero for a while (being neutropenic) and it was sort of a big deal when I was up to .1. Some doctors will consider .5 good to go, mine preferred to wait until I was over 1. Labs drawn on the morning of my discharge showed I had gotten up to 2.8. That, combined with the fact that my fever was gone without Tylenol, I had moved to oral antibiotics and all the other bloodwork was on the rise prompted my discharge. Whew.
I was back on Thursday for a follow up, and I’ll go every two weeks for those. I’ll need a breathing treatment once a month for a bit – the medicine prevents pneumonia. I think it would be oral, though I’m allergic to sulfa meds, so I have to take mine in the form of an inhaled breathing treatment.
Now, we wait. I believe the first scans are 42 days or something after day 0, so mine are coming up in a couple weeks, and then 4 weeks after that. I can feel that the places I can palpate are smaller, though I can’t speak for the liver mets or the one in my lung. Overall, I feel okay. Tired and weak – I’m not sure if that’s because my red counts aren’t back to normal, or because I was in a hospital bed for over 2 weeks, or a combination of both plus surgery recovery and all that. But I’m working on it! And it’s so good to be out of the hospital, and not taking anything. Fingers crossed it did what it needed to!
Please ask me questions – I’m sure I missed something(s) and I’m happy to clarify. I hope this helps some people decide on a therapy route.
ed williamsParticipantGreat write up Tim, keep sharing the journey for others to learn from. If the Iovance TIL’s program gets it’s approval soon, many more melanoma patients will be able to follow your same journey and your words will provide comfort and knowledge for them. I hope your scans come back showing that the Liver Mets are shrinking or gone Tim, best wishes!!! Ed
- August 11, 2021 at 11:46 am
BubblesParticipantTim!!! You are a BEAST!!! (The highest of accolades in my family!) Thanks so much for sharing the deets of your experience. I know this will be appreciated by so many who have the need to follow in your steps. Rest up. Fingers and toes crossed for the best results possible! Well done, my friend! les
- August 11, 2021 at 12:05 pm
jbronickiParticipantWow, this will be so helpful to future people going through this and I’m absolutely wishing you a great response. Thank you for taking the time to write this, especially after going through something so intense.
- August 13, 2021 at 9:55 am
As a lot of us hear from people that face such things, most of the anxiety for people comes from not knowing what is going to happen during these things, your write up will help deal with that, it is invaluable.
You are one tough dude!
Wishing you the best!
Mark_DCParticipantFascinating account Tim, hadnt realised how much of an ordeal this would be, but strangely you seemed to findnjust being stuck in hospital the worst of it. i hope you will have grewt results. Your account will be an amazing resource for other patients, clearly written to the point, thanks very much!
- August 13, 2021 at 3:54 pm
I definitely hope others will find it helpful. An ordeal, yes. It was a hell of a thing. But if its effective, then its totally worth it. I keep coming back to the 80% disease control rate that came out of the latest data. I’m also covered in vitiligo, so maybe this will really kick my immune system into gear to start winning the war against disease. Time will tell.
- August 13, 2021 at 4:54 pm
MelMelParticipantThank you so much for your detailed and superbly written experience with TIL. It is these kinds of personal recollections which I find invaluable. They are certainly worth their weight in gold!
- August 24, 2021 at 2:21 am
Sending healing vibes and keeping fingers crossed for terrific scan results.
clgardnerParticipantThis is extremely insightful. Thank you for sharing. How long after did it take for your immune system and red blood cell count to go back to normal and resume a good quality of life? Any insight to if it’s working following your recent scans?
- August 29, 2021 at 8:58 pm
Thanks for giving such a detailed account. Much more informative than other articles I’ve read
wishing you all the best
- August 30, 2021 at 4:55 pm
My white count rebounded pretty quickly. I got three injections of a medication (I can’t remember what its called) while I was still in patient specifically for that purpose. I was advised I might have some bone pain because they were hard at work making white blood cells. It was basically in the normal range before I left. So I think 5-6 days?
Red blood cells have taken a bit longer. My hemoglobin was just about back to normal on the 19th when I was in for a follow up.
I don’t really have a feel for if it’s working. Before I left the hospital, everything palpable felt smaller, though that might have been from the chemo or who knows what. Last Friday everything felt bigger and the tumor spots were pretty sore. My hope is that its inflammation from an immune response and everything is going according to plan and this isn’t progression already. The pain seems to stick around for a day and a half, and then it’s gone and moved on to another site.
Quality of life is a tricky one. I would say it’s mostly normal, though the surgery was serious and I’m still feeling effects from that. But I started working remotely a couple weeks ago which has been fine, and I’m back to doing normal things around the house like loading and unloading the dishwasher, though more physical activities will take more time.
guynamedbillyParticipantThanks for the write up. I’ve been stuck in TIL limbo for over a year so I wonder if you’re willing to share which hospital did it. I had cells harvested and everything lined up at MDAnderson, but then they put their til program on pause.
- September 3, 2021 at 1:28 am
JudyParticipantI did TIL at MSK in January. I am now experiencing terrible neuropathy in my feet as well as pain in my midsection that started shortly after treatment. I am on morphine for that pain which doesn’t let up. It feels like a tightening around my midriff. Has anyone else experienced this and if so did it ease up or do you have suggestions for treatment.
- May 5, 2023 at 3:12 pm
- May 5, 2023 at 4:38 pm
I had horrible pain in my legs, feet and toes after my combo yervoy-nivo treatment. At the cancer clinic, they didn’t think it was immunotherapy related at first, because they said that they really hadn’t seen it in other patients (chemo, yes; but immunotherapy, no). Onc suspected mel in the spine and/or spinal cord fluid. Had to go to the ER for a bunch of tests, and they finally sent me home also with some type of morphine pain reliever and gabapentin. Neither really did much. The pain eventually subsided to a manageable level, but then has stayed constant for 3 years. My current onc has suggested acupuncture, if I’m interested. She said it has helped some patients and done nothing for others. Really annoying side effect though. Hurts to be on my feet for any length of time.
JD_NYParticipantTim, I’m new to these boards (husband just diagnosed) and I have been reading about your TIL journey. I really hope that your quality of life/recovery had improved even more over the past couple weeks and I really really hope that you get (or got) great news from your scans.
- September 29, 2021 at 1:32 pm
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