nico_suave's Journey with Colorectal (Colon) Cancer

Survivor: Colorectal (Colon) Cancer

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: over 10 years ago, Male, Age: 41, KRAS mutation positive: Don't Know, BRAF mutation positive: Don't Know, Stage III

  1. 1
    • nico_suave
    • Experience with Colorectal (Colon) ...
    over 4 years ago
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    Diagnosed

    Oh No

    I had noticed a small amount of blood in my stool off and on for 6 years, and I reported this to at least 3 different doctors in 3 different time zones before a specialist finally started to take a look up there. After waiting months and months for appointments, things moved alarmingly quickly once the colonoscopy found cancer.

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  2. 2
    • nico_suave
    • Experience with Colorectal (Colon) ...
    over 4 years ago
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    Colon surgery (colectomy or hemicolectomy)

    Procedure or Surgery

    The tumor was in my sigmoid colon (the lowermost section), very near the point where it becomes the rectum. The sigmoidoscopy, as I understand it, removed about 9 inches of my colon through a 5-inch incision right at my belt line. The scar is actually very similar, in size and placement, to my wife's c-section scar. It was a major surgery, though. Not to minimize anything about my wife's ordeal, one difference between our procedures is that my wife's organs were not messed with but mine were. It took a 3-4 weeks until I could laugh without it instantly hurting a lot. It took about that long to be able to walk more than a few blocks without great pain. I think my surgeon did an excellent job. And no ill effects from the procedure remain. One positive development was that I struggled with moderate-to-severe constipation for over 10 years, and that problem has completely disappeared since surgery. I mostly only put "disagree" above because it is a fairly major surgery in my eyes. And you need to allow time to recover.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • nico_suave
    • Experience with Colorectal (Colon) ...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    It could have been worse. About one month after surgery, I started on (what I believe is) the standard chemo regimen for Stage 3 colon cancer: Folfox. My oncologist explained to me that this is made up of 3 agents: (1) Flourouracil, aka 5-FU - I'm told this drug has been used for cancer since the '50's - I found that 5-FU seemed more tolerable than I had imagined the average chemo drug to be. But over the course of all of my chemo months, I think it increasingly started to eat away at my own feeling of wellness. (2) Leucovorin - I'm told this drug's only function was to enhance the effects of the 5-FU. And (3) Oxaliplatin - This is a strange one. This one made me almost instantly nauseous. The effects would gradually diminish with each passing day since infusion, but my stomach and overall energy level felt pretty reliably "delicate" for at least the first 3-5 days. The side effect that sounded the strangest to other people was this drugs nuerotoxicity - specifically, I would be so sensitive to cold that my hands (or any other parts of my body) would go instantly numb when coming to contact with anything cold. It would not really "hurt" that part of my body would just flip from feeling normal to complete numbness (as if my hand had "fallen asleep"). The only thing I would experience in this transition was maybe some numbness and a stark reminder that I was, in fact, "sick" (in case I had managed to forget that for a moment). The degree of actual coldness needed to trigger this tingly/numbness reaction changed throughout the cycle. For the first 3-5 days, I needed to put room-temperature water in the microwave for 12 seconds to avoid having the back of my throat go numb when I drank. A light 30-degree breeze could make my cheeks and fingertips tingle and my chin go numb, much like much colder temperatures would when I was normal. I no longer had to warm my drinks to avoid numbness after 3-5 days had passed. And I had a mini-tradition of going skiing for 3 hours the afternoon before I returned for my next infusion My infusion process was on the long side. I would be in the chair for six and a half hours every other Wednesday at the Huntsman Cancer Hospital. Then I would be sent home with a tennis ball-sized package of 5-FU hooked up to my port, which would gradually empty itself into my body over a 48-hour period. I found that Zofran controlled the nausea better than any other drug, and did not come with any side effects. It was very expensive in early 2007, so I first started trying to manage nausea with Compazine, which made me dizzy and out of it all day if I took it once.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • nico_suave
    • Experience with Colorectal (Colon) ...
    over 4 years ago
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    Blood Clots

    Side Effects

    Two months after starting chemo, and three months after surgery, I bought some Pepcid OTC because I was feeling what I thought was a heartburn in my upper abdomen. It did nothing and the discomfort I felt for a while after eating (or otherwise engaging my abdominal area somehow) gradually got worse and worse. Ibuprofin and hot-pads seemed to help. I began regularly running 101-degree fevers, especially at night, which I could bring down rapidly by just walking around a little bit. My oncologist (not a good listener at all) and my chemo nurse (not good enough at listening to make up for my oncologist) were dismissive of the symptoms as I described them over the phone. They were incurious. Two weeks later the condition had gotten severe enough that I found myself doubled over and groaning for 10 or 15 minutes every single time I ate. I reported for my 6th round of chemo with a fever and a heightened white blood cell count. The nurses decided not to give me chemo and scheduled me for a urgent care appointment. The next morning I woke up with a call from that doctor. The CT I had done showed I had two dangerous blood clots, in my portal and mesenteric veins. I spent the weekend in the hospital thinning my blood and reeling from my newfound realization that the therapy for my cancer can be dangerous in itself. It was during that stay that I met the oncologist Dr John Ward, the director of oncology at the Huntsman. He was the attending that weekend in the hospital. He came into my room before sunrise, did not turn on the light, and sat down beside me on the other half of a pull-out couch I was sleeping on (my special blood-clot-preventing hospital bed would loudly re-inflate every 4 minutes which kept me for being able to sleep at all) He asked me how someone as young as myself came to discover I had colon cancer. And he freaking listened as I told him!! I instantly felt I could trust him, in stark contrast to the constant uneasiness I felt around my oncologist. I spent the next two and a half years campaigning to get him to take me as his patient. He finally relented and took me only when I met with an oncologist at a competing hospital. After this blood clot setback, I experienced anxiety problems that grew steadily worse as the chemo wore on, and continued to grip me until I got Dr Ward to start seeing me. I felt the anxiety lift as soon as I left my fist appointment with him. I would stay on Coumadin for the next year and a half. No one knows what caused these blood clots. Sometimes such clots can be attributed to a surgery if they occur within 3 months of an operation. If you count the first, and the very faintest symptoms I started to feel in early February, you might be able to say that they showed up inside that 3-month window, but only just barely. My surgeon denies that surgery could have been the cause, given the timing of my case. Several medical people said patly "Cancer causes blood clots," which bothered me each time I heard it, because after my surgery, I had no detectible cancer cells in my body. So I thought that either these medical professionals did not even bother to give my chart even the most cursory glance, or they were implying that maybe the cancer had recurred in my body. I hated both ideas. Trust and a Sense of Safety was harder to come by after this event.

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