This post is long overdue but I have an update regarding the trial.
I was supposed to start Day 1 of the trial last Friday. In fact, I took the day off of work, drove an hour and a half in rush hour traffic to Boston, got there and then- NOTHING (aside from paying the $9 parking fee). They sent me home because they did not have my study drug. They realized this 30 minutes prior to my appointment. I do not blame my doctors or nurses, it’s actually the fault of the drug manufacturer. So this is what went down:
This trial is a placebo controlled randomized double blind study. This means that the medical professionals directly working with me and I are not supposed to know which set of drugs I am taking (medication A + medication B or medication A + placebo). That being said the bottles cannot be labeled as to what they actually are. The drug manufacturer accidentally sent labeled study drug to Dana Farber so Dana Farber asked them to collect their supply and redistribute with appropriately labeled bottles. Consequently, the drug manufacturer collected ALL of the study drug including the supply at MGH (even though ours was appropriately labeled).
Communication stopped there. Nobody bothered to share that the medication was collected so my doctor and research nurse had no idea until they went to retrieve it for me. I was not pleased. I drove another hour and a half home fuming.
I’ve been pretty calm and collected, perhaps even a bit too relaxed regarding starting this study. Regardless, there is a level of “amped up” that one must be walking into Day 1 of something unfamiliar. Like any other treatment I have undergone, there are unknowns. Not knowing how I’m going to feel, not knowing if it will work, not knowing how taxing the regular testing will become are all reasons that you need to put your game face on heading into a trial. It is not on my mind all of the time as I try to maintain my life with normal activity like family, friends, work, exercise (and Netflix…obviously) but when I am at the hospital it becomes real.
As of right now the trial is set to start on Wednesday, June 4th. The plan is to have a blood test, take the first set of pills, wait an hour, EKG, home. Hopefully it will go a bit smoother than my last few visits have. Fingers crossed.
On a lighter note: It’s my parent’s 32nd anniversary this weekend 🙂 Happy Anniversary to a couple that can face anything together.