stage 2 pleural and considering clinical trials - what actually filters the options down

Same window here M., had my pleurectomy done and doc said same timeline before starting anything. I'd ask both trial teams straight up for their enrollment numbers and any interim data they've got, not the glossy stuff. That's what separated the real options from the marketing for me.

Gonna be straight with you M., the thing that actually mattered for us was calling the research coordinator direct and asking what their dropout rate was and why people left. That's the number they don't volunteer. We got told one trial had like 30 percent of folks bail because of side effects around month four, which meant the back half of that 18 month commitment was basically people white-knuckling through it.

Also ask them point blank if they've got any preliminary efficacy data yet, even if it's just internal. One of my buddies went with the chemo plus targeted combo at MD Anderson back in September and they showed him actual response rates from their Phase 1 cohort. Made a big difference. The immunotherapy trial we looked at, they couldn't show us anything because they're still enrolling the first arm.

Timing wise, my surgeon wanted the same eight weeks you've got. I waited the full eight and started in late October, but honestly I was cleared at week six and just sat around getting anxious. If your docs say you're good, you're probably good. That window closing is making you rush and that's when you make bad choices.

One more thing. Ask if they're doing surgery plus trial at that site or if you'd be their first combo case. Some trial protocols haven't actually worked out the logistics of post-op patients yet and you don't want to be their learning curve.

Got my pleurectomy done end of August so we're on similar timelines. Navy here, USS Oriskany 71 to 91, hull tech so I spent plenty of time around asbestos lagging and insulation. Never did get hit with the Camp Lejeune stuff but the VA screening caught mine same way yours probably did.

Here's what I'd tell you about the trial pickup. Call the trial coordinator and ask them three things nobody volunteers. One, how many patients have they actually enrolled in the last six months. Two, what's their dropout rate and why are people dropping. Three, ask to talk to someone already in the trial, not the marketing version, the real participant. Most sites will connect you if you push. We did that at Norfolk VA and found out the other trial had guys dealing with neutropenia bad enough they were missing treatment windows. That matters.

The data question is legit. Ask them straight up if they've published interim results or if there's a data safety board report. If they're cagey about it that tells you something. I looked at ClinicalTrials.gov for both of mine and read the actual protocol documents, not the patient summary. It's dense but you can skim for enrollment criteria and endpoint definitions. One of them had a primary endpoint that was basically "didn't get worse" which is not the same as "actually got better."

On timing, my surgeon gave me the same eight week window. I started my trial at week ten because waiting felt like dying slowly but honestly week nine would've been fine. The body heals faster than you think if you're not pushing hard. Just make sure you're clear on what "heavy treatment" means in their protocol. Some trials don't start heavy until week four anyway.

Don't let them rush you. You've got time and you need to make the right call here.

Yeah I get this. October diagnosis here too, had my pleurectomy at Scripps in December same as you. Still waiting on my VA claim from November, it's sitting somewhere between San Diego and whatever black hole they call their processing center.

Here's what I actually did. I got offered two trials and I picked the one that had published interim data. Not marketing materials, actual published data. The coordinator didn't want to hand it over at first but I told her straight up I was a Marine and I know how to read a report, just give me what you've got. She did. That matters because you can see real side effect profiles and actual response rates, not projections.

The other thing nobody mentions is call your trial site and ask them point blank how many patients they've enrolled in the last six months. If it's slow enrollment that means longer waiting for results and sometimes it means the protocol itself isn't working as hoped and word gets around. My first option had enrolled like 3 people in a year. Red flag.

Timing wise I waited the eight weeks like Scripps told me. Honestly I needed it. The surgery takes more out of you than you think even when you feel okay. Started my trial in late February, so about two months post-op. My surgeon wanted me fully healed before the immunotherapy kicked in because you don't know how your body's gonna react and he didn't want to be guessing if it was the surgery site or the drugs.

Ask about the actual data. Ask about enrollment numbers. Don't let them rush you into a decision in one visit.

Same boat, had my pleurectomy in August and I'm looking at trials too. What helped me was asking the coordinators straight up for their enrollment numbers and any interim data they've released, not the marketing pitch. Timing wise my surgeon said 10 weeks before starting anything, so yeah that window matters.

Did my pleurectomy in August so we're on similar timelines. Here's what I looked at that the coordinators don't volunteer.

First thing I did was ask for the actual enrollment numbers and how many patients they've already dosed. If a trial says they need 40 people and they've only got 8 after a year, that tells you something about whether the drug actually works or if people are dropping out. The coordinator at my first consult got real quiet when I asked that. Got the answer from the medical monitor instead.

Second was looking at the inclusion criteria for people who've had pleurectomy. Some of these protocols were written before they knew how that surgery changes your lung capacity and function. I found one trial that basically wanted you post-op with full PFTs already recovered, which is unrealistic. The other one actually had a pulmonary function threshold that made sense for someone 8 weeks out.

The immunotherapy angle sounds newer and cleaner but ask them specifically about pneumonitis rates. That's lung inflammation from the immune activation and it can get serious fast. They'll give you the grade 3 and 4 numbers if you push, but they don't advertise it. The chemo plus targeted route is older playbook but there's more long-term data on tolerability.

I went with MD Anderson for my follow-up work instead of a trial because I wanted flexibility on my treatment and they had recent data on post-pleurectomy outcomes. Not saying that's your call to make. But I asked every single coordinator for their last safety report and their 12-month progression numbers before I decided anything. Most of them will give it to you if you ask like you actually understand what you're reading.

Timing wise, eight weeks is solid before you start anything systemic. Don't let anybody rush that.

I'm gonna be real with you because you're asking the right questions and most people don't. My dad had the pleurectomy back in March before we even knew he was stage IV, so I watched him try to navigate trial eligibility right after surgery and it was a mess.

Here's what actually matters that the coordinators won't volunteer. One, ask them flat out for their current enrollment numbers and accrual rate. If a trial started enrolling last year and they've only got 12 patients, that's a red flag for either slow recruitment or strict exclusion criteria that might filter you out later anyway. Two, request the actual protocol document, not the summary. I know it's dense but you'll see things like whether they're measuring response at 6 months or 12 months, what their stopping rules are if efficacy isn't there, and what the actual grade 3 or 4 toxicity rates have been so far in the phase 1 or 2 data. The marketing materials absolutely downplay side effects.

The chemo plus targeted drug thing, ask specifically if that targeted drug requires genetic testing of your tumor first. If it does and they haven't done that yet, that's another 2-3 week wait. With your 8-week window closing that matters.

For timing post-op I had my dad's oncology team talk to his surgeon directly. They weren't in the same health system which made it harder but the surgeon told us exactly when his lung function would be stable enough. Most protocols need you at least 6 weeks out from major surgery anyway, sometimes longer. Your surgeon's 8-week recommendation is probably conservative which is good, but the trial team needs to confirm they can start you on their specific protocol at that exact timeframe. Don't just assume they can.

One more thing nobody mentions: trial sites sometimes change their protocols mid-enrollment based on interim data. We switched trials for my dad in October because the first one changed their dosing schedule and it would've extended his treatment by 4 months. Ask them what changes they've made since they started enrolling and whether they anticipate any protocol amendments coming.

You sound like you know how to read a medical record so use that. Get those protocol documents and compare them yourself.

Got my surgery at Scripps too, December 12th. Same window you're in right now. Here's what I actually did instead of just trusting the coordinators.

I pulled the trial protocols from clinicaltrials.gov before I even talked to them. That's where you find the actual inclusion and exclusion criteria, the endpoints they're measuring, and sometimes how many people they've already enrolled. The immunotherapy trial in my area had enrolled maybe 6 people in 8 months. The chemo combo had 11. That told me something about how selective they're being or how slow recruitment is going, and either way it affects your experience.

Called the trial sites directly and asked to speak with someone who's already in the trials, not the coordinator. Not everyone will connect you but some will. The guy I talked to on the immuno trial had been in it 4 months and still had persistent fatigue that the coordinators downplayed as normal recovery. The chemo guy said the nausea was real but manageable with the right anti-nausea protocol they eventually dialed in.

I also looked at where the trial PI is publishing. If they've got recent data out there about their protocol from other institutions, read it. Not the abstracts, the actual methods and results sections. That's where you see the real side effect rates and response rates they're actually getting.

My surgeon wanted 8 weeks too. I hit that mark in late February and started the immuno trial in early March. The timing worked because I could ask my oncologist and surgeon to talk directly before I committed. They need to coordinate or you're gonna have conflicting instructions about activity level and imaging schedules.

The VA thing is separate. File everything, keep copies, move forward with your own medical care. Don't wait on them for this decision.

Got the same barracks asbestos you did, Camp Lejeune 78 to 82. And yeah, the trial coordinators will dance around the real questions. Here's what I did and what I wish I'd known.

First thing I did was call the principal investigator directly, not the coordinator. Ask for a 15 minute call. Tell them you're a potential enrollee and you want to understand enrollment numbers, how many patients they've actually dosed, what the real dropout rate is. Most PIs will talk to you because they need enrollment. The coordinators work for the institution, the PI actually cares about the science. That's where you get straight answers about whether the trial is actually moving or if they're sitting on 6 enrollees.

Second, ask for the actual protocol document, not the summary. Your oncologist can help you read it but you need to see the exclusion criteria section and the adverse event data they've collected so far. If they won't give it to you, that's a red flag. I got mine from my surgeon at Scripps, she had connections to the research department and pushed back when they tried to hand me the glossy version.

The timing thing is real. I had my pleurectomy in December, started the immunotherapy trial in late February so about 9 weeks out. Your surgeon's 8 week window is solid. But here's what they don't tell you: recovery from the trial drugs can be different than recovery from surgery. I was stable from the surgery around week 5, felt decent, thought I was ready. First infusion hit me different. Fatigue, some neuropathy starting. Not dangerous but it added time to actually feel functional again. So don't just plan for the surgery recovery, plan for the trial drug ramp up on top of it.

One more thing. The VA claim sitting in bureaucracy, yeah I know that anger. Mine was filed November, it's now February and nothing. Don't wait on it for treatment decisions but DO keep copies of everything. Doctor notes, pathology reports, military service records showing where you were stationed. When your VA claim finally moves, you'll need that documentation and it moves faster if you're not scrambling to recreate it.

Which trial is which, the immunotherapy or the chemo combo? That actually matters for how you approach the next 8 weeks.