Skip to main content

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

Veteran · · 7 views
Got diagnosed June and had the pleurectomy in August at Eastern Virginia Medical Center. Doing okay recovery-wise. Now I'm looking at a couple clinical trials and honestly there's a lot of noise out there.

I was on the Oriskany from '71 to '91 as a hull tech, so asbestos exposure was just part of the job back then. Nobody knew. Anyway, that's water under the bridge.

Here's what I'm trying to figure out. When you're looking at trials, what's actually worth paying attention to versus what's just marketing. One trial is at Duke, one's at UNC. Both say they're looking at stage II patients. Duke's protocol involves chemotherapy first then some kind of immunotherapy combo. UNC's is immunotherapy only. The Duke trial has been running since 2019, UNC started in 2023.

I'm not afraid of chemo. I served with guys who went through way worse. But I want to know if I'm picking based on real data or just because one center has a better reputation. The trial coordinators are friendly enough but they're selling the trial, you know. That's their job.

What did people actually look at when they made this call. Case numbers. How long patients stayed on the drug. Whether they could keep working or if the side effects knocked you flat. I'm still working part time as a consultant and I'd like to keep doing that if I can.

Anybody else done this with stage II pleural.

2 Replies

Veteran
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.
Veteran
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.

Share Your Experience

Sign in or create a free account to share your experience.

Discussions in this community are for informational and emotional support purposes only. They do not constitute legal advice, medical advice, or an attorney-client relationship. Always consult a qualified professional for advice specific to your situation. Community Guidelines

Call Now: (800) 400-1805 Free Case Review • Available 24/7