Don’t get me wrong, clinical trials can (and do) save lives, uncover new therapies, increase the understanding of medical science. All worthwhile goals made possible by subjects who offer their bodies as living laboratories. True heroes, every one.
As a family member of a patient who’s undergone 20 years of cancer treatment, I feel uniquely qualified to offer insights that might help anyone (patient or loved one) considering clinical trails in their course of treatment. This is the point where some very hard choices need to be made and I’m not saying don’t go ahead. What I’m saying is that if you do submit to a clinical trial, know what you’re in for, and be sure those around you do too.
It’s my belief that serious illness, especially when it threatens your very existence, puts you at a horrible disadvantage in more ways than the obvious one. Yes you’re sick, feeling lousy and scared out of your mind… and never have you wanted your life more. You will do anything, bargain anything for your life. You’re facing the ultimate battle with that all too human need to survive leading the charge. Understandably your priorities shift, vanity is forgotten and you find you can draw on strength you never knew you had.
Enter the clinical trial, science that’s reasonably (sometimes amazingly) close, but not quite there, staffed by data loving researchers who’ve had little practice in bedside manner or offering reassurance. Side effects… oh yes, there are those, but they are different for every patient — some have none the researchers are quick to crow — while you aren’t as likely to hear about those who struggle with the treatment, and then the potential upside makes a few discomforts seem manageable enough… silly to mention really… until you’ve spent three days unable to get off the couch with mouth sores so bad you can’t eat or talk.
When it comes to side effects and clinical trials, throw everything you know, or experienced aside and be prepared to learn anew. A clinical trial is, first, last and always, an experiment where there are many unknowns.
What most people don’t realize about clinical trials is that you can go through all the steps to quality and find out you don’t – for no reason you can control… a blood value is too high, your tumor isn’t quite big enough. The blow of not qualifying is utterly devastating to a sick person… to someone fighting for their very lives. They can feel every inch the failure, and any future therapy seems to pale in comparison to that gloriously promising clinical trial.
And realistically the treatment options at this stage aren’t all that great. Early on in our own cancer battle we heard, again and again, that there are “many, many” therapies to try, that new things were coming out “all the time”. Only as you move along in the fight, as your enemy becomes more wily and intrenched, do you come to realize that the “many” treatment options you’ve heard so much about omit one key word — good. Oh there are treatment options all right… laden with the worst, most troublesome side effects, the most restrictions and discomforts, along with a few others that are clearly a last resort.
When illness is a part of your everyday existence,, the lure of a cure is powerful… perhaps too powerful, causing you to downplay side effects and hardship. Your life is worth that… and more, no question. Yet the all too natural desire for survival makes it hard to see the very real downside of offering your body as a living lab.
If you do take part in a clinical trial, my experience suggests…
1. Never lose sight of the fact that you’re consenting to become a living, breathing, side effect suffering laboratory. This is not going to be easy, or quick or without a price to be paid in suffering or quality of life.
2. Keep asking questions about results, new findings, patients leaving the study or any other adverse events. You don’t have to ask for the successes, the researchers will fall all over themselves to share those with you.
3. Warn your loved ones/caregivers that in taking this step, you may get far sicker than you’ve been in the past. It will reassure them to know that sometimes (hopefully not too often) it might seem like they’re watching you die, inch by inch. That is what’s happening in fact, but that’s so they can kill the cancer and save me, you’ll see.