A couple weeks after I finished chemo-radiation, my chemotherapy infusions started. I left a much more thourough explanation of the decisions and regimen of the chemo in my Timeline page, but we ultimately decided on a 3-agent protocol with the drugs Fluorouracil (5-FU), Oxaliplatin, and Irinotecan,. The last drug, Irinotecan, is not in the standard of care protocol, but is included in a protocol followed by the JANUS trial with the though that it may increase the chances of avoiding surgery, or "organ preservation" in medical terms.
I always get pre-treatment labs done a couple days before my infusion. I usually get these done on Friday and have my infusion on Monday, though this schedule got messed up a few times. The lab values come back immediately and I'm told right away if there is anything out of range requiring a delay in treatment. I came close with my white blood cell count dropping, but never had to delay an infusion. They also take my blood pressure right before the infusion starts and I was often too high to start right away, so we had to wait and relax to get my blood pressure low enough to start. My issue was always my diastolic (lower number) pressure being over 100, though my systolic (high number) was often in the 140s.
During the infusion day, the chemo drugs are delivered through my port (see Port Placement page) from bags hanging from a rolling metal tower. It's the same setup you'll see patients pulling around any hospital hallway (or smoking patio). The bags are connected to me through plastic tubing that runs through a pump which controls the rate that the drugs are delivered. The 5-FU and Irinotecan are delivered at the same time over about 3 hours and then the Oxaliplatin is delivered over the same amount of time. I'm typically in the infusion center from about 9:30AM-4:30PM. I am then given a portable pump that I wear for the next 36 hours as more of the 5-FU drug is slowly squirted into my heart.
There was a total of 8 chemo infusions and they were done every other week. The total ended up being 17 weeks because I had to delay one week while I was traveling for Chirstmas. During the infusion, I would sit in the chair closest to the bathroom, because the drugs can give you diarrhea and/or nausea. I never experienced this, but I did always need to use the restroom multiple times during my infusion. On the fist day of the infusion, at the end of the Oxaliplatin bag, I would always get a symptom where my hands, jaw and tongue would lock up and i couldnt really use them for about 20-30min. Other than that, the infusions would just cause a general lousy feeling; a horrible taste in my mouth; food to taste bad; a peripheral neuropathy where my hands, feet and throat were VERY sensitive to anything cold (including air) and would go numb or tingle often; and my hair to eventually thin and fall out. After the 17 weeks, though, I was able to "ring the bell" commemorating my completion of chemotherapy!
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