Comment by jcims
4 days ago
That’s definitely one way to look at it.
I would just say that ‘dangerous’ is relative and when the standard of care leaves effectively no hope, your tolerance for risk can change. Yes this does increase that chance of shortsighted decisions or manipulation. That just comes with the territory, I’m still very appreciative that we have the option to elect to participate in the peocess.
The bigger problem with trials is not the danger, so much as the fact that they're unlikely to do anything.
As GP noted, most drugs don't work. To make it a bit more specific, even in phase 3, the failure rate for cancer drugs is something like 50%. And that's typically for some non-survival endpoint (assuming you even get the treatment, which is itself a coin flip).
Clinical trials are noble, admirable things to do, but too many people think of them as treatments, when they really are not. They're an experiment that you do with your body when you reach the end of the road and there are no more options.
It always makes me a little sad to hear how patients talk about trials and fight to get into them, as if being in the trial is somehow progress. Expectations are not being managed properly.
>The bigger problem with trials is not the danger, so much as the fact that they're unlikely to do anything.
And? What is the point of this observation? Of course they are unlikely to do anything. Your other option is to do nothing and die. Nothing wrong with that if that's what people choose to do...'accept their fate' and all that. I'm not opposed to it at all, there's a certain appeal to it.
But when your wife and the mother of your two beautiful daughters is laying helpless on nature's altar you fucking move dude. You don't do nothing.
The point is exactly what I said: “doing something”, in this case, is not the same thing as “saving your loved one’s life.”
> Your other option is to do nothing and die
I really don’t want to be this blunt, but I don’t know how to say it any other way: death is not an option. When you’re at the stage of clinical trials for cancer therapies, it is the inevitable outcome. Otherwise, you wouldn’t be in the trial. Maybe it extends the inevitable, maybe it doesn’t. The odds lean heavily toward the latter. And there’s also always a cost.
I’ve lost friends and family to cancer too, and watching people you love torture themselves with ineffective (or even minimally effective) treatments is agonizing.
When it comes to clinical trials, you need to start with the cold, hard reality that you’re doing an altruistic experiment with the remaining portion of your life. There are lot of people who don’t understand that, and see trials as some kind of back-door to better treatment.
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