The Availability and Logistics of Participating in Clinical Trials
A year ago, my medical oncologist walked into the office and informed me that he was pulling me out of the trial that I had been in for four years. I was dumbfounded and devastated. I was set to receive Opdivo Infusion #99 that day and, in my mind, was already celebrating my 100th treatment. Milestones notwithstanding, my cancer was growing and changes had to be made.
My fabulous oncologist, who was far less concerned with seeing me get Infusion #100 and way more worried about keeping me alive, had come into the office armed with several treatment options. There was another clinical trial beginning that he thought was a good fit or I could start docetaxel treatments until another exciting trial opened.
My first oncologist had offered me a similar choice when my tumors started growing after my first line treatment of carboplatin, Alimta, and Avastin. Back then, my options had also been to begin docetaxel or go into a clinical trial. The oncologist told me docetaxel was likely to make me even sicker than I had been with my first treatment and that it didn't have as much success in stopping tumor growth.
The decision was a no-brainer back in 2013 and it was a no-brainer in 2017. I had absolutely no desire to go the chemotherapy route again if there was anything ... and I mean anything ... else I could try instead. Besides, I had thoroughly enjoyed being a part of the clinical trial. I was anxious to begin another.
Then came disappointment and confusion
Unfortunately, while July 2013 was a month full of hope and excitement as I joined the clinical trial for a new-fangled and promising drug, July 2017 was a month full of disappointments and confusion. The new trial closed before I could meet all of its requirements and there was no other trial immediately available at my treatment facility.
I had had it so easy the first time around. I went to a new facility, interviewed the doctor, heard about the Opdivo trial. I started the trial. Boom-boom-boom. No waiting. No looking for a trial. I assumed that's how it always went. You put yourself out there to participate ... and the trial was there waiting.
Realizations about clinical trials
Not so. Sometimes, like in my case, there were upcoming trials, but nothing immediately available. With my cancer growing again, simply waiting for the trial to become available really didn't make much sense. I remained adamantly opposed to resuming chemotherapy. That was an experience from hell for me and I was in no hurry, to say the least, to put myself through that again if there was anything else that could be done.
I spent many hours researching clinical trials, looking for clinical trials for which I might be eligible. I was surprised that there really weren't any in the Dallas area or in the Houston area for which I qualified. I learned that my assumptions about clinical trials being out there just waiting on a willing participant were dead wrong. I realize now how naive I was.
I ended up not joining a trial. I miss being in one, but it just wasn't feasible for me. I ended up having the offending tumor radiated and then resumed my Opdivo treatments. (I got to celebrate Infusion #100 after all!)
Traveling for treatment
I have several friends who are in trials that are many miles away from their homes. They travel from Oklahoma to Colorado, from Florida to Boston ... great distances away from their homes. I do not know how people handle the logistics of participating in trials far from home. Unless my travel expenses were paid, I would be unable to participate in a trial that wasn't within driving distance of my home.
I wonder, have you been in a clinical trial? Did you have to wait for the right one to become available? Do you or did you have to travel great distances to participate?
Do you find that staying zen through your lung cancer diagnosis has helped you in your journey?