Belle, I've read your blog so I never would think you're lazy!
But you have so much going on --I'm happy to help you in any way I can, and save you some time searching.
As you said, I'm not a doctor so I'll give it just my laywoman opinion, based in what I've read and based on emotion, probably. Also, know that I only have been focused in trials that involve immunotherapy (harnessing the own immune system against the cancer), cancer stem cells inhibitors (agents that go against the 'seeds' of the disease) *or* a bit of chemotherapy with the idea of long-term remission (or cure). I'm not really aware of those that involve new chemotherapies; if there are still any, they go under my radar, I'm afraid.
At what point should I consider doing a trial? I don't want to wait too long - on the other hand, I'm afraid to step away from my current regimen for fear it would allow the cancer to grow.
*If* you're considering to do a trial, I'd say don't wait until you had 2nd or 3rd line of treatment. I feel that's a frequent mistake in treatment strategy.
First, there is the problem of the inclusion criteria
: yes, some trials will take only people for whom all lines of therapies have failed but others won't take people who exhausted all options. Also, people may be in not good shape to travel and do all the errands that trials usually involve, if they wait until the disease is too advanced.
Second, if you're going for trials with immunological agents (like vaccines, these PDL / PDL1 agents, etc.), you need to have some immune system left
, because the idea is that your own immune system will take care of the cancer -with chemotherapy at the maximum tolerated doses that the standard-of-care uses
, the treatment is destroying cancer, yes, but also your immune system *and* it's promoting stemness (the persistence of cancer stem cells, the 'seeds'). So, just my opinion, but I think it's best if you don't consider a clinical trial as 'last chance'. I'd go for a clinical trial even before having second line chemotherapy, for example.
Said that, clinical trials are that... trials. Experimental. That an agent is 'new' doesn't mean is best, or free from side effects. So one need to do some research about what side effects people are getting from them, what results; sometimes you go for a Phase I clinical trial (say, certain agent as monotherapy), which may sound scary (Phase I!), but if you know that there is also an ongoing Phase III trial for that same agent in combination with something else, and it's safe... that gives you some reassurance.
Also, you always can quit the trial -because you don't like the side effects, because you're tired of traveling, etc. I'd be a bit cynic and say that maybe the researchers themselves will leave you out of the trial if you're in any danger, not only because they are doctors but because they want their numbers to look good : ) Reality is that you're watched with hawk's eyes if you're in a clinical trial. If a cancer is not responding, the patient will be probably out of the trial and back to standard treatment. And, as a stage IV unresectable patient, you may get some decent months thanks to the 'failed' trial, which is not little.
I said *if* you're considering to do a trial because I realize that they are not for everybody; I don't think everybody should go or can go for a trial. Some people can be very smart using the regimens that the standard of care offers, or alternative/ complementary stuff, or both, and find it's way during long time with that.
Since you asked direct questions, I'm giving you direct answers: being in Seattle, I'd go to the Seattle Cancer Care Alliance to see Dr Edward Lin. He would know if you are eligible for the trial he's doing (ADAPT trial capecitabine + celecoxib http://clinicaltrials.gov/show/NCT01729923
, in your case it'd be without radiation), or he would give you chemotherapy but
doing a lot of tweaks so your life is not miserable with the idea of put you in long, long term
remission, because the treatment would be targeting the *stem* cancer cells (say, ten years; for me, it would be very different to endure chemo for some months if there is that goal, than doing chemo just until my body can take it. Sorry to be blunt, but I see your signature and I've read your blog, so I know you're a realistic person and you know that chemo won't cure you or allow you to live lots of years with good quality of life. Isn't great to think that you may have a new chance? Watch this, if you have the chance: http://www.youtube.com/watch?v=aIyUSAHtPBI
). He would also add immunological agents (GMCSF shots, for example) and other out of the box ideas, if you're game. And even if you go there and don't like him at all, you'd be in the place where this trial I posted here, MPDL3280A, will be held (I'm pretty sure the location listed there in Seattle, Washington, is the SCCA).
I've posted ad nauseam about Dr Lin protocol
and I know many may think I'm his agent but you're in Seattle so I have not other option that tell you about him : )
PM if you want me to be even more direct : )
And, hey, thank you for the trust... makes me blush. I'm just a stubborn book editor who wanted and failed to help her friend, not other credentials : )