picking a clinical trial with stage II pleural - what actually matters

Got the same call back in October after a cough that wouldn't quit. Had my pleurectomy in December at Scripps and now I'm in this exact same spot trying to figure out which way to go with follow-up treatment. So I hear the frustration.

Here's what nobody tells you straight. The trial coordinators are nice people but yeah, they're presenting the best case scenario. What I did was ask for the actual patient data sheets, not the glossy protocol summary. Duke's been running longer which means more follow-up data on how guys actually tolerate it long-term. That matters more than I thought it would. Talked to my oncologist separately from the trial meetings and asked him point blank which protocol he'd pick if it was his brother, not his patient. That conversation changed things for me.

The chemotherapy first route at Duke sounds worse on paper but sometimes getting ahead of it early is better than playing catch-up later. I haven't committed to anything yet because my VA claim is still in limbo from November and I need to know what that's gonna cover before I lock into a multi-month protocol. But the working part-time thing, that's real. Don't let anyone tell you that doesn't matter. If the side effects are gonna wreck your ability to function between treatments, that's a legitimate factor in the decision.

Ask both trials for names of patients you can actually talk to. Not the success stories they volunteer. Ask the coordinators for contact info of someone who got on the trial, did the treatment, and is maybe six months out. Most people will talk if you ask directly.

Yeah the trial coordinators aren't gonna tell you which one has better real-world outcomes, you gotta dig into the actual published data yourself. Duke's been at it longer so there's more follow-up data out there if you know where to look.

Got diagnosed same month you did, June. Had my pleurectomy at EVMC too, August 15th. Small world.

Here's what I looked at. First thing was how many stage II patients they'd actually enrolled, not how many they wanted to enroll. Duke's been running longer so they had actual outcomes to show, not just projections. That matters. I asked to see progression-free survival numbers for patients like me, not the whole cohort mixed together. The trial coordinator at first gave me the glossy stuff, so I pushed back and asked for the raw data they'd presented to the IRB. Takes a little Navy persuasion but they'll give it to you.

The chemo question. Yeah I could handle it. Did handle it, actually. But what I really wanted to know was whether guys on that protocol could still work during treatment. Turned out most of them couldn't, not even part-time. Some of that was the chemo, some was the immunotherapy schedule. UNC's immunotherapy only meant fewer hospital visits, which meant I could keep consulting. That was the tiebreaker for me. Enrolled there in September.

One thing nobody tells you upfront. Ask them flat out how many patients dropped out and why. Not the ones who died, the ones who just quit because side effects were unbearable or life got in the way. That number tells you more than the survival curves.

I'm six weeks in now. Doing alright.

Duke's longer track record probably means they've worked out the side effect issues better, but honestly call both trial coordinators and ask for their actual progression-free survival numbers and not just the pitch. That's what made the difference for me when I was deciding.

Got my surgery done in December at Scripps, so we're in similar territory right now. Haven't gone the trial route yet but I've been doing exactly what you're doing, trying to separate the sales pitch from actual data.

The thing that made sense to me was asking about progression-free survival numbers, not just overall survival. One oncologist at Scripps actually had the raw data sheets for a couple trials and the difference between what they highlight in the pamphlet versus what's actually in those numbers is pretty stark. Also asked about discontinuation rates, like how many people couldn't finish the protocol because side effects got too rough. That's the stuff they don't volunteer.

For your work situation, I'd specifically ask about hospitalization rates and what the "bad day" side effects look like month to month. Chemo and immunotherapy hit different. Chemo knocked my buddy's cousin flat for 3-4 days after each round, he couldn't work. Immunotherapy can be sneakier, lower grade stuff that wears on you but doesn't necessarily put you in bed. But everyone's different and there's no way to predict your own response.

One thing I did was ask which trial had more stage II patients specifically, not just lumping all stages together. Duke's been running longer so they've got bigger numbers to draw from. That matters. Also called the VA to ask if either trial had any veterans on it and what their experience was like. Long shot but worth a call.

The coordinators being friendly is fine, but ask them hard questions and watch how they answer. If they get vague about side effect frequency or why certain patients dropped out, that tells you something.

You're asking the right questions. Don't let the pedigree of the institution make the decision for you.

Joe did chemo first with his immunotherapy and honestly the side effects were rough for like the first month but he's been able to work from home most days now, so that Duke protocol might be worth asking them specifics about timing and whether you can space out treatments. I'd ask both trials straight up how many of their stage II patients are still working and what their quality of life scores actually look like, not just the survival data they lead with.

Joe's team at Moffitt really pushed us toward asking about what they call "time to progression" rather than just response rates. Sounds boring but it actually matters because that's how long people stayed stable, you know? With a clinical trial you're not just looking at did the tumor shrink, you're looking at how long before you need the next thing.

We also asked them straight up about people staying on treatment versus dropping out due to side effects. The coordinators weren't thrilled with that question but they gave us the numbers and that was eye opening. One trial had like 30% of patients pulling out because the fatigue was just too much. That's real data you can actually use.

Here's what I'd do if I were you. Ask both Duke and UNC for their published results if they have any, even preliminary stuff. 2019 versus 2023 means Duke's got way more follow up time on their patients so you can actually see the long term picture. UNC's newer so honestly nobody really knows yet how people do after a year or two. That's not their fault, it's just math.

The part time consulting thing matters. I taught full time through Joe's chemo and let me tell you it was rough. Some of his colleagues did better on certain protocols than others and side effect management is like half the battle. Ask specifically about their supportive care plan and whether they have experience with people trying to keep working. Not all trials are set up the same way.

You sound like you've got your head on straight about this. Good luck with whichever you pick.

Same boat man, Oriskany '78-'86 as a machinist mate. I'd ask both trials straight up for their progression-free survival numbers and what percentage of patients actually completed the full protocol, that's the real tell. The coordinators will give you the data if you push for it.