I had a question about clinical trials. Basically:
1) How to get involved? I tried calling 1 or 2 and got helpful responses, but I'm not really sure if this is something I should be doing myself or if our oncologist should be involved.
2) How to pay? Are they normally covered by the organization offering the trial or does insurance normally cover them? There are a lot of them offered by institutions outside of my Mom's HMO network, and none of them discuss anything about payment.
3) Role if any of your regular oncologist or team of doctors.
The context is this: My mom who was just diagnosed with SCLC is starting off with conventional chemo (and perhaps radiation). There's no particular need it seems for a clinical trial for phase 1...that would delay her care (and she is only starting chemo 5 weeks after diagnosis anyway), there are very few first-round trials for SCLC and given that the first round is typically highly effective and my Mom's cancer is very limited, there didn't seem to be any reason to do it right now. Seems like it could be very important for round 2 though...most stories I've come across of long-term survivors seem to have gotten good traction out of a clinical trial at some point.
However, before we had the full info on the plan of care, I did research and found that there are A LOT of phase 1, 2 and 3 clinical trials in our area (NYC), and I gathered the full list. I researched which ones my Mom would be eligible for and summarized each one.
Unfortunately, I was pretty disappointed with the reaction of my Mom's two oncologists. One was very negative on all of it and seemed to try to push us into her first round trial even though that would delay my Mom's treatment up to 6 weeks. She also made some other questionable recommendations like NOT getting a PET scan (even though the other doctors and literature all seem to think this is very important). So, we decided to stop seeing her. The second doctor (same medical group) is better in general, but on this topic it was frustrating to deal with her. I let her know that I have no idea how to go about doing any of this, and she was so cagey...trying to get info out of her was like pulling teeth. When I asked her how to determine which one was right, she just said "contact them and talk to them." When I asked her which ones seemed interesting or promising based on the sorts of drugs they were trialing and any past/similar research, she seemed hesitant to answer and basically said she thinks this "Rova-T" drug is promising and that we should consider anything involving that. I can't remember exactly what was said otherwise, but it just seemed that essentially if we go into a trial we will no longer be under her care and therefore she didn't want anything to do with it because we were going elsewhere.
Is this normal or are doctors normally more collaborative on this question?
How should I go about short-listing those to keep in mind for round 2?
I've seen a few recent promising drugs in various clinical trials...has anyone heard of anything through the grapevine as to whether or not these are anywhere near showing actual results? Some examples here, but I also attached the full list I found.
EZH2 Inhibitors: https://www.mskcc.org/blog/scientists-home-treatment-advance-chemotherapy-resistant-small-cell-lung