As we close out Colorectal Cancer Awareness month amidst the corona virus outbreak, I would like to share my perspective as a current clinical trial patient. The feeling of uncertainty that surrounds the trial process has taken on a new layer with the need for social distancing and the unique demands on our healthcare system.
I was fortunate to start my trial in the middle of February, so I avoided what many incurable patients are facing right now. Trials are not available. Most trials are no longer taking new patients, and trials that have not started are being put on hold. The longer the pandemic lasts, the longer the wait for patients who simply can’t wait.
Chemotherapy recently stopped holding my cancer at bay. It slows the growth, but no longer keeps it stable. My cancer also started to cause some lung damage and pain in my lower right lung. After a hospital stay, some further pain, and a couple scans, my doctor recommended going for a trial and asked what I thought. I was immediately on board. It was time. I’ve been at this for seven years with active disease; and, other than the whole cancer thing, I’m doing pretty well in the health department. I have always wanted to do a trial while I was still somewhat strong. I never wanted it to be a last-ditch effort even though it kind of is. I just wanted to start one with a fighting chance before I became too weak, so that is what I did.
I am fortunate to have access to a cancer hospital that tests all new patients for hereditary genetic mutations and tumor biomarkers. The testing is essential to ensure the best treatment for every patient. I am also at a research hospital; and, luckily, clinical trials were available for the mutations that came up in my results. After further testing, signing paperwork, a chemotherapy washout period, and a baseline scan, I started my new treatment.
For the first five weeks, I drove three hours each way to receive required testing for my trial. After a few weeks the atmosphere changed. The usual questions about cold and flu symptoms and travel became COVID-19 centered. The city around the hospital became less crowded. The hospital parking garage had more vacant spaces than ever. Patients sat in waiting areas as far apart as possible with gloves, masks, and wary looks in place. Plexi-glass walls were mounted around reception areas and soon patients were not permitted to have anyone else at their appointments without extenuating needs.
The drive itself became a source of stress. I was afraid to stop at restrooms or to eat. I’m sure the people working at these essential service jobs were just as afraid to see me. No one wants to accidentally endanger anyone else due to uncontrollable circumstances. Especially when they are simply trying to survive medically, financially, or do their lifesaving and essential jobs.
This week I was able to do my testing locally. It was still uncomfortable, but I didn’t have to worry about stopping anywhere on the way to and from my appointment. I was sure to thank everyone I could in the office, but it did not seem like enough. The risks healthcare workers are taking everyday are humbling and heroic. My trial healthcare team contacted me for a remote appointment, and I travel back to see them next week. I expect the hospital to be even more changed than my last visit. This visit will be important because it is my first scan on the trial drug.
To say I am nervous does not do this feeling justice. I need this scan to be good. As I mentioned before, trials are on hold or in limbo right now. I would most likely not be able to get on a new one. I will have to depend on compassionate care from my insurance company if I qualify for anything off-label and not normally used for colorectal cancer. Or, I will have to go back on chemotherapy knowing it will not stop this disease. Every direction I turn is pretty daunting, but I have a family I want to have more time with, so I do what I have to do. Just like every other incurable patient facing cancer.
So now I will appeal to everyone on behalf of cancer patients and honestly people in general. This virus does not seem to discriminate based on age like originally reported. Cancer is like that too. So many people do not have a choice to stay home. They are your first responders and healthcare workers. They are your grocers, delivery services, convenience clerks, and a host of others. They are also the vulnerable like me, who need treatment for various reasons and lives depend on it. So, for all our sakes, and especially my friends who are waiting for trials right now, please stay home.