A big part of Stage IV cancer life is “seize the day” or “carpe diem” in the original Latin. It comes in many different forms but all are connected to that ticking clock over your shoulder reminding you that your time on Earth is looking shorter than you had originally planned.
You get an opportunity to go skiing with your daughter in the middle of the school year? You take it without hesitation. You see a possibility of visiting a close friend while on a cross-country trip? You figure out how to do it. A clinical trial opportunity appears unexpectedly? You grab it with both hands as hard as you can.
As a currently incurable Stage IV cancer patient I know that the chemotherapy I am currently taking will not last forever. My tumors will become resistant. When they do, absent a successful clinical trial, I will die of cancer in my 40’s. I know this but I have not accepted this as inevitable. I have absolutely no intention of dying in my 40’s, not if I have any say in the matter.
So it all comes down to clinical trials.
I have been diagnosed not with one type of cancer (Stage IV colorectal) but a second one as well (Stage I melanoma) in the past 3 years. My melanoma was presumably cured via a day-surgery – but its simple appearance on my medical record is enough to block me from most clinical trials.
Recently, a friend of mine suggested a cutting edge immunotherapy trial to me. I assured him I had looked at the trial multiple times. Although it was an exciting scientific idea, my melanoma history blocked me from it. He was, however, insistent that I check again. I nodded mostly to be polite but then figured it couldn’t hurt to check one more time.
The second cancer trial exclusion was gone! I rubbed my eyes in disbelief. Had I read my computer screen accurately? I carefully confirmed that yes, they had just changed the trial rules.
Both my oncologist and I immediately contacted the trial company. No definitive response. I knew I had to seize this rare opportunity. I had been waiting for a chance like this for over a year! With internet sleuthing I found the emails of the oncologists running the trial. I emailed them as quickly as I could, they almost immediately responded. After meeting for a consult, I am now set up for my first immunotherapy clinical trial! There are only about 30 slots nationwide for this trial. The wait list was already forming even though most trial sites are listed as “not yet recruiting”.
My trial site will be the appropriately named City of Hope Medical Center.
I am grateful for my friend’s insistence. I am thankful that I had the Stage IV mindset to seize the day. In this case it may end up saving my life.
Dr. Tom Marsilje is a 20-year oncology drug discovery scientist with “currently incurable” stage IV colon cancer. He also writes a personal blog on life at the intersection of being both a cancer patient and researcher “Adventures in Living Terminally Optimistic,” a science column for Fight Colorectal Cancer "The Currently Incurable Scientist", and posts science and advocacy updates to Twitter@CurrentIncurSci. This guest column appears on Diagnosis: Cancer through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for over 850,000 patients and caregivers.
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