My Introduction

Here it is, October 26, 2018. Nearly 5 years after diagnosis in December of 2013, and I’m still alive and cancer free.

I wanted to update my thread and let you know that I consider myself cured. A word that becomes taboo once you’ve had cancer, it seems. No doctor or other healthcare professional dare utter that word.  Survivors and providers seem to prefer the terms “remission” and “NED (no evidence of disease)” I assume for reasons related to liability and superstition.

I’ve been off treatment (Keytruda) for nearly 2 years and cancer free for nearly 3 years. It’s only in the past 6 months that I boldy use that “cured” word 😉

I continue to have a chest CT and abdominal MRI every 3 to 4 months and since I like data and CA 19-9 is a solid indicator of disease for me, I go in for monthly labs.

Life is good.

I struggle with the aftermath of my ordeal, but I’m not complaining. I only document them here to try to help others. Issues include fatigue, bouts of ascending cholangitis, pancreatic digestive insufficiency, borderline pre-diabetes, and SIBO (small intestine bacterial overgrowth). Pancreatic issues result from aggressive radiation on my recurrence that damaged my pancreas. All the rest are related to the common bile duct reconstruction during my initial resection in January 2014 – Scar tissue has formed at the interface of my bowel and liver where the bile drains and it “gunks” up on occasion, allowing gut bacteria to migrate up into the biliary tree and cause serious infection. I’ve had multiple ER visits with multi-day hospital stays for IV antibiotic administration resulting from this. Once, I even went septic from it. The SIBO is related as well – there’s basically a section of my small intestine now  that’s a “dead end”. It fills with partially digested food and then it just sits there and festers, growing gut bacteria like crazy. I’m struggling to find the right long-term treatment for this. Oral antibiotics are the way to keep it under control but they have their own bag of side effects.

My best to everyone reading this!  -Matt