April 08, 2026 marks my second year as a metastatic colon cancer patient. i have undergone a dozen cycles of standard of care (SOC) chemo treatments (Irenotecan, Oxaliplatin, and 5-Fu plus anti-VEGF), saw some tumor shrinkage in both the primary tumor and stable disease in some of the liver mets while glacial growth in other liver mets. i was treated with anti-VEGF and then anti-VEGFR after the SOC minus Oxaliplatin (due to neuropathy, we discontinued Oxaliplatin, a common reason for Oxaliplatin discontinuation) in hopes of slowing or at least controlling the liver mets. These treatments proved to be unsuccessful, the liver mets continue to live their best life and the primary tumor has also slowly started to progress, albeit exceedingly glacial in pace. So, around the time of my second anniversary, we went back on chemo with infused Oxaliplatin and oral 5-Fu (Capecitabine). After 2 cycles and seeing no change in my CEA numbers, we decided to also add back Irenotecan. So it was on April 30th, 2026, i was sitting at my local infusion center with Jenn, infusion going as normal. Irenotecan went in without issue, and then they hung the Oxaliplatin bag up and began that infusion. Jenn had just stepped out to get us some lunch at the food truck outside the medical center when i unplugged the pump and, with the IV stan and pump in tow, proceeded to the restroom in the infusion center. i knew i was not feeling normal at this point, about 15 minutes into a 2 hour Oxaliplatin infusion. i was sweating more than normal and, with every step, i can hear my heart drum in my ear at a faster pace. In the restroom, i sat down and relieved myself all the while feeling progressively worse, sweating more, feeling very clammy, heart rate very definitely elevated and continuing to do so. As i thought to myself that i should speak to the infusion nurses after my restroom use about stopping the infusion, my vision started to tunnel. i quickly cleaned myself up and flushed the toilet and stood up, at which point i realized that i can not support myself standing and, for my own safety, i should sit back down. i did so, and reached for the pull cord of the alarm and yanked it (thus satisfying a personal bucket list item… for as long as i have worked at labs affiliated with hospitals, i’ve always wanted to pull the alarm and see what and how fast things happened subsequently). The nurses outside immediately called out to me to see if i was responsive and i was still able to definitively give a feeble but audible “no, i am not okay” (at this point, Jenn was preparing our lunches at my infusion chair when she heard the restroom alarm go off and the thought of “did Tony just pull an Elvis” flashed across her mind as she hurried to the restroom to see what aid she can give). i was, however, able when they asked, manage to stand up and, using the IV and pump stand as a crutch, stumble the three steps to the door to unlock it. Their reaction was all i needed to substantiate that i was, by all definition, not in good shape. The call for “get him a chair, and wheel him to the bed” was immediately raised and, through my bleary eyes, i can see a crowd of scrubs around me and hear voices and action as i was placed in a wheel chair and wheeled into the room in the infusion center. i am not sure how they got me on to the bed, but that they did, and quickly adjusted the bed so that my head was lower than my chest as they took my vitals. “50/30” was what i recalled hearing from the nurses before “call 911 immediately” was shouted. Then the room suddenly became very full, large firemen and EMTs crowded in as the nurses filtered out to attend to their own patients. Repeated questions of “what is your name? do you know where you are? can you tell me what happened?” was directed at me while various leads were attached to my chest and leg. A decision was quickly made that i needed to be transported to the ER at the larger medical center next city over. Four firemen, gripping the bedsheet in their hands and chuckling at my mumbled comment of “gosh, i hope the sheet doesn’t tear” shifted me over to the stretcher and off i went. Everything blurred by, overhead artificial lighting, bright sunlight outside, cracks in the pavement, up the ramp and down the ramp, then a click and a clack, i was loaded into the ambulance. Then more leads were attached to me and the same questions were asked. The door closed, the siren was turned on, and off we went, hitting, i believe, every pothole on the road (thus checking off my second bucket list item of riding in the back of an ambulance with the sirens running).

Long story short, after a bunch of fussing at the ED (no longer ER i found) and an overnight stay for the sake that i don’t crash again, i was allowed to go home. They ruled out sepsis, blood clot in my lungs (CT scan, where i experienced the hover mat transfer for the first time with great delight) while i experienced the joy destroying meal experience of being, somehow, put on a low carb (due to my diabetes) and bariatric surgery (god knows how that was decided) diet (clear liquids only). The conclusion was that i developed a sensitivity to Oxaliplatin, which is a known occurrence for patients who has received more than 4 to 6 cycles of the drug.

On May 21, 2026, i went back to the infusion center and received just Irenotecan, which i showed no ill effects from, thus reaffirming that my episode was indeed due to Oxaliplatin. Thus, the treatment regimen i am now on, for whatever good it may or may not do, is Irenotecan and Capecitabine. So far, my CEA numbers has not moved, but that is not saying much as the assay has a ceiling of 10,000 units and everything above is simply expressed as >10,000, which was the outcome for the past 4 or 5 blood labs. i am due for a CT or PET in a month, where we shall determine if i will continue with the treatment regimen. We are keeping an eye on experimental treatments, but i am not interested in joining a Phase I cohort, not am i really excited about CAR-T or T-cell engager type treatments, not that there are many that i would qualify for.

Because colon cancer, especially metastatic colon cancer, is difficult to treat, patients who has failed multiple lines of therapies or who has liver mets are often disqualified from clinical trials. As a drug developer, i certainly understand the reasoning, i too would not want to risk, needlessly, a clinical death or lack of treatment efficacy due to the fact that metastatic disease and liver mets are terribly difficult to deal with and treat. However, on the patient side, it does quite limit the options for patients suffering from the same conditions that i have.

Of course, at the recent ASCO conference, everyone was excited by the anti-active RAS treatment from Revolution Medicine drew wide acclaim on the very promising outcome in pancreatic cancer trials (doubling progression free survival, PFS, and demonstrating strong responses in treated patients), so there is a clamoring for the Multi-Specific RAS(On) drug to be trialed in all solid tumor diseases to see if it can positively affect more than just pancreatic cancer. Am i hopeful? i don’t know. While i would gladly accept a chance to add to a datapoint and advance the understanding of a drug function and outcome, i am also well aware that any trials will select against hard cases like mine that has red flags everywhere (failed multiple lines, liver mets — and now lung mets squirreling around as well). However, there is no harm being realistic about expectations and having a sliver of a glimmer of hope? Then again, i drive under the Powerball and Mega Millions Lottery billboard everyday and though filled with hope in my heart, i have still yet to play. LOL.

So, will there be a year three update? Who knows, all i know is that, though it is bummer to get mCRC, i an grateful for this experience so that i can better understand the patient experience as a scientist in drug development. Yes, we hear from cancer survivors first hand, but hearing about bowel insecurity and having actually experiencing it is two different things. Having to decide on whether i can endure a 4 to 5 hour flight to attend a conference because i don’t know if i can hold my bowel together for so long is indeed quite restrictive on how one can live professionally and personally, It is, on the grand scheme of things, a small matter, however, it does erode one’s range of movement and confidence in public. In the commercials, all you see is smiling active people doing happy active things when the truth may be far from that, when the truth may be deciding if you can go on that 2 hour hike without soiling your pants or being so exhausted as to be useless for the rest of the day due to both the disease in question and the drug effects of your treatment plan.

i continue to count myself as a lucky man, to be able to experience so much and to be so well supported. Realistically, i am also slowly preparing for when things go south and how to make sure those around me are not overly burdened with the unnecessary and trivial.

Meanwhile, we strive to push PTM-001 into clinic as we truly believe PTM-001-ADC will benefit colon cancer patients and that PTM-001 will benefit IBD patients. So, in that sense, i am still leading a full and filling life, just that the pauses for assessing my bowel confidence is more of a frequent occurrence these days. Net outcome, not bad at all.