LexieCat Posted April 25, 2021 Author Share Posted April 25, 2021 I've been poking around, trying to get some info on the actual experience of patients who have been through this treatment. Most are melanoma patients--that's where this was pioneered. Anyway, I found this article to be one of the most detailed: https://www.curetoday.com/view/unleashing-the-power-within-using-tumorinfiltrating-lymphocyte-therapy. As I suspected, the treatment itself was pretty daunting (this patient was treated in 2016, in a trial at MD Anderson in Houston), but this patient has been cancer-free since. Before this treatment, her oncologist had run out of other options. Obviously, this is the result I'm shooting for. There are tumor characteristics (I forget the specifics) that lung cancer shares with melanoma--which, according to Dr. Hong, makes it a natural to be treated using the same technique. Another article about a lung cancer patient, treated with TIL therapy more recently: https://www.curetoday.com/view/cell-based-therapies-may-level-the-playing-field-in-non-small-cell-lung-cancer Link to comment Share on other sites More sharing options...
LexieCat Posted April 25, 2021 Author Share Posted April 25, 2021 Another interesting recent (last month) article--focusing on the scientific side, and specific to treating lung cancer with TIL therapy: https://www.curetoday.com/view/the-future-of-adoptive-cellular-therapy-in-lung-cancer Link to comment Share on other sites More sharing options...
Jesse L. Posted April 25, 2021 Share Posted April 25, 2021 So, I read the article and it is quite informative concerning the TIL immunotherapy treatment. A few hurdles for a fact, but all other treatments have their share of them as well. I can imagine that committing to such a trial makes you excited and ultimately curious as to the outcome. Then too I'm sure there's a certain amount of trepidation about it as well, but then you know all too well the alternatives and some of them aren't too pretty either. Given its efficacy, I am kind of surprised that research into natural and customized immunotherapies hasn't mushroomed more in the previous many years since it began. It makes sense and in a lot of cases it seems to work really well. Well, who am I to know the the why and what over things...maybe it's because the treatments are so expensive? That doesn't make much sense either in that more effective treatments should lead to efficiencies of economy on a greater scale. You know...the American way. Oh well, all good to you in your efforts. I'll be watching and awaiting you trial and it's results. Link to comment Share on other sites More sharing options...
LexieCat Posted April 26, 2021 Author Share Posted April 26, 2021 I'll see my surgeon tomorrow, but as of now, the initial surgery (to harvest the tumor sample to provide the cells for infusion) is tentatively scheduled for a week from Thursday. Went for a bunch of lab work today--blood, urine, and an EKG. The research nurse met me there--she needed extra vials of blood for the study. I was mildly perturbed that Cooper's policy doesn't allow them to draw blood from ports. But the wonderful phlebotomist got me on the first try. I'm starting to think the key is to scare the heck out of them before they start poking you willy-nilly. More testing later this week, and brain MRI is on Monday. Oh, and not that it necessarily means anything, but the research nurse said she had a feeling I'd manage just fine during the actual treatment. Link to comment Share on other sites More sharing options...
TJM Posted April 27, 2021 Share Posted April 27, 2021 2 hours ago, LexieCat said: I'll see my surgeon tomorrow, but as of now, the initial surgery (to harvest the tumor sample to provide the cells for infusion) is tentatively scheduled for a week from Thursday. Went for a bunch of lab work today--blood, urine, and an EKG. The research nurse met me there--she needed extra vials of blood for the study. I was mildly perturbed that Cooper's policy doesn't allow them to draw blood from ports. But the wonderful phlebotomist got me on the first try. I'm starting to think the key is to scare the heck out of them before they start poking you willy-nilly. More testing later this week, and brain MRI is on Monday. Oh, and not that it necessarily means anything, but the research nurse said she had a feeling I'd manage just fine during the actual treatment. Dang..you are going to be glowing from all those scans! KP also doesn't allow their lab draw blood from my port. Luckily, their techs are really good at drawing blood. Such an adventure you are on. I really hope the trial goes well GF. Peace Tom Link to comment Share on other sites More sharing options...
LexieCat Posted April 27, 2021 Author Share Posted April 27, 2021 Only imaging is the brain MRI--they are using the chest and abdomen/pelvis scans I had a couple weeks ago. All the other tests are non-imaging. The only one that still hasn't been scheduled is the pulmonary function testing. All my blood draws at Penn were through the port, thankfully. One more reason to love Penn. Here's something amusing/interesting. I went for my regular physical therapy appointment today, and my therapist told me his brother-in-law is a cancer researcher in Boston, specializing in immunotherapy. My therapist was fascinated to hear about the details. So while I was doing exercises with the resistance band, he's texting his BIL about my trial. Clearly, this guy knew what we were talking about. So I basically got a free consult during PT! 🤣 Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 27, 2021 Share Posted April 27, 2021 Bout time you caught a break! Free consult- that’s classic! Link to comment Share on other sites More sharing options...
LexieCat Posted April 27, 2021 Author Share Posted April 27, 2021 Incidentally, I'm sort of enjoying this "breather" from treatment while they tee up the trial. Physically, I'm feeling better than I have since I started chemo/immunotherapy. Too bad I'll have to subject myself to the intensity of surgery, followed by a brutal couple of weeks of treatment. But it sure would be nice if this works and I could be cancer- AND treatment-free. Link to comment Share on other sites More sharing options...
Dallasdoug Posted April 27, 2021 Share Posted April 27, 2021 Great to hear you are feeling good, LexieCat. You deserve the breather. Our thoughts and prayers are with you. Link to comment Share on other sites More sharing options...
LexieCat Posted April 27, 2021 Author Share Posted April 27, 2021 Well, crap. A potential monkey wrench in the works. Met with my surgeon today and he's afraid there may be no way to get enough tissue for the trial. He said to go at the "bulky" part of the tumor would require resection of way too much lung tissue, which would reduce my pulmonary capacity so much I'd then probably be ineligible for the trial. Since our goal is not to make me worse off than I am now, I wouldn't want him to try. His one thought was to order a PET-CT and hope that there are enough active lymph nodes (which would be much more readily accessible) to provide a sufficient sample for the trial. They are gonna try to schedule the PET CT as soon as possible and he said just as soon as he gets the results he'll call me. Even if all goes well, it will push surgery back a week. So nothing to do now but wait to see what happens. LOL, I'm not accustomed to HOPING for cancerous lymph nodes. I'll keep moving on with the testing in the meantime. If this trial is out, Dr. Bauml said he can get me into one of the others at Penn. Link to comment Share on other sites More sharing options...
Tom Galli Posted April 27, 2021 Share Posted April 27, 2021 Lexie, I'm so sorry! The worst thing about this disease is uncertainty, and I know I'm preaching to the choir. I do hope the PET-CT provides a path for easier biopsy. Stay the course. Tom Link to comment Share on other sites More sharing options...
Judy M2 Posted April 27, 2021 Share Posted April 27, 2021 Uggghhhh. Link to comment Share on other sites More sharing options...
Jesse L. Posted April 28, 2021 Share Posted April 28, 2021 If it isn't one thing it's another?! There you go doing the right thing all along by trying to minimize/eliminate your tumor and mets and now when you need some it there might not be enough for your trial? I'm so sorry your're having such difficulties! Another "surprise" you didn't need I'm sure but as we've all stated one way or another on these forums, this disease is unpredictable and can cause any one of us momentary lapses of sanity. Despite all the difficulties, I dearly hope everything works out and your trial continues as planned...! Link to comment Share on other sites More sharing options...
LexieCat Posted April 28, 2021 Author Share Posted April 28, 2021 I don't think it's so much a matter of "not enough" tumor as it is the location. It's deep within my lower right lobe but it's diffuse enough that to get enough of it, too much lung tissue would have to be removed. Surgeon spent half an hour going through my CT scan, slice by slice, to try to figure out a plan of attack and he just couldn't--not without doing too much damage along the way. But he's going to try to see if there's any way we can do it with the lymph nodes, and at least I'll get the PET CT I've been wanting (and that Dr. Bauml sees no need for). I'm trying to be philosophical about this--it just kinda sucks because I've been psyching myself up. I feel like Neil Armstrong--if his flight got canceled. I sent a message to Dr. Bauml about this potential snag and to give him a heads-up that I might be hitting him up soon about one of the trials at Penn. As between those two, I COULD do either one. I'm eligible for both. I kinda leaned toward the one because aside from the experimental immunotherapy they inject into the tumor, the Alimta and Keytruda would be continued on the same schedule. I've tolerated that pretty well. The other one involves weekly infusions for 12 weeks with a new immunotherapy drug, every three weeks combined with Keytruda. So if I need to go to one of those I'll probably ask Dr. Bauml which one he thinks sounds more promising. Link to comment Share on other sites More sharing options...
LexieCat Posted April 28, 2021 Author Share Posted April 28, 2021 So they scheduled the PET-CT for this Friday and the research nurse said they are keeping the 5/7 surgery date (Iovance wanted 5/7 rather than 5/6), hoping we can use it. Iovance is paying for that scan so we could schedule it fast. Apparently Dr. Hong (running the study) and Dr. Shersher (surgeon) conferred and agreed that going for the lymph nodes would work, if they are active. The next few days is tests and more tests. Pulmonary function test is immediately after the PET-CT on Friday. Pre-surgical COVID test this morning, echocardiogram later this morning, stress test tomorrow, PET CT and PFT Friday, and brain MRI Monday. Keep your fingers crossed, folks! Link to comment Share on other sites More sharing options...
Judy M2 Posted April 28, 2021 Share Posted April 28, 2021 Good luck!! I just want to let you know that all day yesterday after my PET scan I felt lightheaded and weak, I assume from the radioactive tracer. I've never had this reaction before, so I'm blaming the Covid vaccine, even though I had my 2nd shot in February. I feel fine today. I will let my oncologist know when I meet with him to go over scan results. Hope you don't have any more roadblocks! Link to comment Share on other sites More sharing options...
TJM Posted April 28, 2021 Share Posted April 28, 2021 What a ride so far. Cant wait for the main plot line! Link to comment Share on other sites More sharing options...
LexieCat Posted April 28, 2021 Author Share Posted April 28, 2021 15 minutes ago, TJM said: What a ride so far. Cant wait for the main plot line! LOL, IKR?? Enough with the teasers and trailers for this blockbuster. Link to comment Share on other sites More sharing options...
LexieCat Posted April 28, 2021 Author Share Posted April 28, 2021 3 hours ago, Judy M2 said: all day yesterday after my PET scan I felt lightheaded and weak, I assume from the radioactive tracer. I've never had this reaction before, so I'm blaming the Covid vaccine, even though I had my 2nd shot in February. I feel fine today. I will let my oncologist know when I meet with him to go over scan results. Yeah, let me know what he says. I've never had a problem with the PET CT, either, though the low carb diet required for 23 hours before the test is generally a challenge. I never met a carb I didn't like. Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 28, 2021 Share Posted April 28, 2021 So Houston scrubbed the first launch & we're hoping for “better conditions” on the next go round. Actually I’m a little surprised there wasn’t a PET ordered following the CT scan as part of the re-staging process. It’s great that pharma is going to reimburse which saves all the insurance hassles. In keeping the surgery on the books, they must have a pretty good gut feeling about this. So now it boils down to the all too familiar hurry up and wait. Ugh is right. Link to comment Share on other sites More sharing options...
LexieCat Posted April 28, 2021 Author Share Posted April 28, 2021 Oddly, Dr. Bauml doesn't seem to see the need to order PET CTs--every time I've asked, he's said there's really no point. And I believe he knows what he's talking about, but I gotta admit I don't really understand it. In any event, it will make me feel better to have this done. And I was thinking the same thing, Michelle--it seems like they think this is gonna work. I actually lay awake for half an hour or so last night with all this stuff running through my mind (I normally sleep well), but by the time I got up today, I was sort of resigned to having to move to Plan C. And then the research nurse contacted me and said they were going to try to push ahead. I just got a notification from Penn that I have a NP/infusion visit scheduled for 5/7. I'm assuming that's for my Zometa, since that's the only infusion I'm still getting at Penn. The research nurse at Cooper said it's fine if I have it a day or two before surgery, so I'm trying to reschedule that now. I figure I won't feel up to traveling for it for a week or so after surgery. Link to comment Share on other sites More sharing options...
Tom Galli Posted April 28, 2021 Share Posted April 28, 2021 Lexie, OBTW, What is IKR??? Is it equivalent to WTFO...👀 Link to comment Share on other sites More sharing options...
LexieCat Posted April 28, 2021 Author Share Posted April 28, 2021 I see my lab results from a couple days ago are posted. Everything in normal range, except: LDH is high; TSH is SLIGHTLY high; RBC and hematocrit a bit low (which has been the case for a while). Link to comment Share on other sites More sharing options...
LexieCat Posted April 28, 2021 Author Share Posted April 28, 2021 12 minutes ago, Tom Galli said: OBTW, What is IKR??? Is it equivalent to WTFO... It's "I know, right?" See https://theweek.com/articles/445475/know-right-anatomy-wonderfully-nonsensical-phrase Link to comment Share on other sites More sharing options...
Jesse L. Posted April 29, 2021 Share Posted April 29, 2021 Sorry I missed the newest news with your situation...I had my second infusion today and as before I'm still feeling pretty good. I know however that starting on Friday it will be downhill for me until next Thursday or so. If you haven't had a PET scan yet that would very much surprise me but then even though I actually had one prior to my surgery, it did not catch active disease sights. There was no where that "lit up" from the the injected contrast even though a later biopsy indicated positive adenocarcinoma in a lung nodule. In any case, I did not have any problems with either the fasting before or the contrast used for my PET scan and I hope that the same occurs for you. Plan on about 35 to 45 minutes in the machine while holding your arms above your head for all of that time. That part kind of hurt even me and I do so hope that does not bother you with your clavicle issues. I do so hope that you get to continue on in the trial that you wish to be a part of; the Dr.'s seem to be hopeful at least so that's a big plus. But in any case then if not this trial then another... I'm sure you'll keep us in the loop...we're pulling for you!☺ Link to comment Share on other sites More sharing options...
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