mattreidy

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

See http://www.merckhelps.com/

SIde effects are rare but can be serious. Generally autoimmune problems. Minor issues can be resolved with steroids but serious issues will require stopping treatment.

I’ve experienced some fatigue, but nothing serious and certainly nothing at all like chemo or radiation.

Take a look here for more info: https://www.keytruda.com/non-small-cell-lung-cancer/keytruda-side-effects/

Hi Everyone,

Time for another update… I continue to be NED (no evidence of disease). Scans in January 2017 show no cancer and my CA 19-9 marker remains normal.

I am continuing to take Keytruda (pembrolizumab) off-label, once every three weeks. I’m not sure when I will stop.

Here are some updated charts showing my history too.

-Matt