Pursuing Clinical Trials
When Terry and I were searching desperately for some hope - anything at all that could possibly extend her life, preferably with some quality - I spent many long nights here at my computer screen looking for the experimental treatment you hear about on TV dramas that might magically cure her Cancer. In our case that hope came a little too late, although we did finally find a drug trial that would accept her. She was patient number 0001. I say it came a little too late because she didn't quite make it to her 1 month follow-up; but the hope it gave us was like being lifted in a beautiful hot air balloon above our worries. Although they were plain white, she called them her "gold pills" because she said they were as precious as gold to her. This baffled more than one hospital nurse who would search in vain for gold-colored pills among her prescriptions.
The journey to that drug trial, however, was fraught with plenty of raw emotion and terrible disappointments. Before you endeavor to find a clinical trial I recommend you sit down and take careful stock of your reality. These trials are for research, and the research has to be exacting and highly controlled. They really aren't allowed to care how dire your situation is; if you don't meet the strict protocols for any reason, they just can't accept you. It's the heart wrenching truth that each trial is seeking some very specific outcome, and you might be disqualified for reasons completely out of your control. We were turned away from so many Kidney Cancer trials because Terry had become diabetic and had high blood pressure, and her Cancer had already spread to her brain. You would think those issues wouldn't matter since they seem so completely unrelated, but alas... they were controls in many of the studies for which we might have otherwise qualified. I can't tell you how many times I hung up the phone in tears after an emotional exchange with clinicians whom I was certain just didn't "get" that my sister was dying!
So do yourself a favor: take a calm day when you can communicate clearly and without too much emotion about the details of your situation before attempting to contact the leaders of these drug trials either by phone or in writing (each trial will usually stipulate the preferred method of communication). Ask right up front about any exclusionary conditions (such as heart disease or diabetes) that might preclude you from their protocols. This will help both of you avoid wasted time and energy pursuing a study that isn't right for you. Feel confident asking detailed questions about the process of the trial to ensure you will be comfortable participating and "sticking with it." Nothing is more disheartening for the clinicians than when they lose valuable research data (and let's face it - time and money) because patients withdraw mid-study. And by all means try your best not to take it personally if a particular study simply isn't a good fit for your or their needs. From experience I can tell you that energy is better spent seeking the next opportunity.
So with that, we give you a direct search of ClinicalTrials.gov, which currently indexes 86,598 trials with locations in 172 countries: