Clinical Trial Participation Contrasted with Standard of Care Treatments
Back in 2013, I opted to join a clinical trial. My first-line chemotherapy treatments had worked briefly, but once we stopped the treatments to give my body a rest, the tumors took full advantage and made up all the ground they had lost during treatment.
Joining a clinical trial
When I joined the trial, I had basically run out of other options. I could have opted to undergo docetaxel treatments, but my first oncologist had dissuaded me. He told me that docetaxel often was not as effective as my first-line treatment and that people frequently did not tolerate it as well. I had been extremely ill while undergoing my first-line treatment. I chose not to participate in a treatment where there was a big possibility that I would feel even worse.
I had a lot of misconceptions about clinical trials. I honestly believed that I was participating solely for altruistic purposes. I believed my life was coming to an end but I wanted to use the time I had left to try to help future generations of people with lung cancer. I had no idea that when I joined the trial the life that was saved might be my own.
I had to quit the trial after four years when a tumor finally outsmarted the trial drug. Because I needed different treatments to address the growing tumor, I could no longer meet trial qualifications. It broke my heart when I learned I would have to quit.
Clinical trial versus standard of care
I've now been out of the trial for a year. I find it interesting to contrast my treatments when I was in the trial with the standard of care treatments I get now.
The trial team consisted of my oncologist, a nurse practitioner, a researcher, and my nurse. Of course, there were other nurses involved, too - the ones who drew my blood for numerous blood tests every two weeks and the infusion nurses who made sure they did every little thing exactly according to the trial protocol. I had an army of people watching everything there was to watch about my health.
For the first two or three years of the trial, I had to have CT scans of my chest and my abdomen every six weeks. I had so many scans that I almost learned to drink barium without shivering. Finally, for the last part of the trial, we got to extend the time between scans to three months. However, there was never a time that I didn't have two scans.
My trial drug was infused every two weeks. I saw either my doctor or nurse practitioner and the researcher at every visit.
Contrast that with the standard of care treatment. I still get scans every three months, but now I only get one scan of my lungs each time. I haven't had a scan of my other organs since I left the trial. I like that I get less radiation and I don't have to drink the dreaded barium, but it also means that we can't be sure that there have been no metastases outside of my lungs.
My treatments now
My treatments are now given once a month instead of every two weeks. That actually has little to do with whether or not I am part of the trial. Even while I was in the trial I was given the choice of going to monthly treatments. However, I now only see my oncologist or nurse practitioner at every other visit. That means I only see them every other month now, despite being in active treatment. The blood tests that are done at each visit are not as comprehensive. For instance, the Comprehensive Metabolic Panel blood test is done at every visit, but the CBC with differential, done every two weeks while I was in the trial, hasn't been done for a year.
I'm not complaining, nor do I think that I am not given quality care now. But, I do think it is very interesting to contrast the level of care I received while participating in the trial and now. If you have participated in clinical trials, have you found this to be true as well?
Where have you found the most support during your lung cancer journey?