One Real Wish and One True Fear: In Support of Cancer Prevention Pharmaceutical’s FAP-310 Clinical Trial
May 19, 2015
Growing up with Familial Adenomatous Polyposis, for me, meant growing up with an intimate knowledge of my own mortality. I never met my paternal grandfather who died at the age of 36, but the legacy of his death was significant. My father grew up thinking he, too, wouldn’t make it past 36 and lived his life accordingly. As such, he, perhaps unwittingly, passed this notion on to me. At 37, I’m living in ‘extra innings.’ To quote Skip Carey, beloved Atlanta Braves announcer, "it’s free baseball from here on out."
I live my life with one guiding thought…Every day, I wake up and think “Am I enjoying life?” If the answer is no for too many consecutive days, I begin to make changes. Living with a truncated lifespan, or at least the perception thereof, forces me to live in the moment. I don’t have a savings account because the thought of ‘living until retirement’ is foreign to me. Instead, I capitalize on everyday. I appreciate what I have and continuously strive for what I consider the ideal life. It was easy for me to turn my back on my PhD in Chemistry, leave research, and start the Hereditary Colon Cancer Foundation. I scoff at the conventional 60 hour work week and am fine making less money if it means I can enjoy every day more by doing so.
I should mention here that the perception of a
truncated lifespan is a reality I created. The truth is that, with proper screening and treatment, any person with FAP can live well into their 70’s and 80’s. I would have never believed that had Dr. Randall Burt himself not told me so last year! When he did, I went from thinking I’d die in my 50’s to realizing I can die an old man! Dr. Burt gave me in an instant what no other doctor has…20 extra years!
To further illustrate my approach to life, I learned to snowboard when I was 36 and became an instructor at 37. As I write this, I am working remotely in Costa Rica while learning to surf in the mornings. Shawnie and I live an active life with no intention of slowing down anytime soon.
As much as I appreciate life and focus on building a life I can enjoy continuously, not just on the weekends, I have one real wish and one true fear.
My one real wish is that I could have had my colectomy at a later age. I was 15 years old when my colon was removed and, as a result, I have a j-pouch that fits in the cavity of a 15 year old boy. Had I been able to wait 5-10 years, my body would have grown and matured more and my j-pouch could have been bigger. Anyone with a j-pouch knows what the effects would be but, in short, it would be really, really nice if I could reduce the number of bowel movements I have daily and extend the time between to, say, 8 hours.
My deepest fear is that I’ll one day need a whipple procedure. My father, uncle, and cousin all had this horrible surgery and it grossly decreased their quality of life. I link my father’s early death (age 54) directly to the effects of this surgery. My uncle was extremely ill for a year because of a nicked pancreas during the procedure. Its invasive, life altering, and scares the hell out of me.
This wish and this fear are exactly why I, as an FAP patient and Founder/President of the Hereditary Colon Cancer Foundation, wholeheartedly support clinical trials that test therapies which may prevent the effects of this disease. As of today there are several trials seeking to reduce or eliminate the growth of polyps. You can learn more about these by doing a search on ClinicalTrials.gov. If any of these prove to be successful, children might be able to wait until adulthood before getting a colectomy.
The trial I want to highlight today is Cancer Prevention Pharmaceutical’s ongoing CPP-1X/Sul clinical trial. Why? Because I’ve spoken at length with the founders and I believe in their mission. They used to work on the other side of pharmaceuticals - working on the treatment of cancer. But they came together to form this company for one reason - to PREVENT, rather than TREAT, cancer in people with FAP. As you can imagine, when I heard their story, I felt relieved that someone out there was fighting for us.
At the time this was written, this trial is taking place at eight US/Canadian sites and four European sites. Their drug pairing aims to prevent polyps from growing in the colon. Will they alleviate the need of a colectomy for FAP patients completely? That is to be seen. But the 15 year old kid in me would love to see this treatment help other FAP patients wait until young adulthood to need a colectomy.
CPP makes no statement as to the efficacy of preventing polyps in the small bowel. But the pathway to polyp formation is very similar in the upper and lower intestines and, for this reason, I’m hopeful that the treatment will also be effective for polyps in the small intestine.
This clinical trial may be the very answer to my one real wish and one true fear. But to know for sure, the trial needs participants. If you are interested in reading more about this trial, click here or watch the video below of a live chat featuring Dr. Carol Burke (Cleveland Clinic) and yours truly. If you do participate, we’d love to hear about your experience. Email me at or call me at 334.740.8657.
April 14, 2015
July 26, 2016
July 18, 2016
March 22, 2016
October 1, 2015
June 12, 2015
May 19th, 2015
May 1, 2015