FOLFOX/CAPOX: Side effects

Diagnosed: July 2021

Stage: IIIB

Type: Colon cancer, one involved lymph node

First, let me go back to the last treatment…. If you saw my “in the chair” picture you will know that my absolute neutrophils were still down. They were at 1.0, and for round 4 and the doctor had wanted them at a minimum of 1.2. When I saw the results on MyChart, prior to seeing the doc, I assumed that treatment would be delayed again. However, he said we could go ahead (woo hoo!) but that I would need an injection of Neulasta at pump disconnect on Wednesday. Neulasta is a neutrophil stimulator that should boost my neutrophils for the full two weeks between treatments. Fingers crossed – I’ll have a blood test prior to Monday’s treatment and will know for sure. Also, I didn’t mention that my platelets are low now, too. Platelets are what cause clotting in the blood, and if they are too low you run the danger of uncontrolled bleeding. Mine are not yet *that* low, but bear watching. In the meantime, I am very careful not to cut myself. Mark is doing all the food prep requiring peeling or chopping. Between the lower ability to fight infection and the prospect of bleeding, I’m being mighty careful these days.

As for the ups and downs, it seems that maybe there is a pattern emerging. Unlike most people on the FOLFOX regimen, my chemo week seems to be better than my “off” week. It’s usually just the opposite according to folks in the Colontown community. My life is marked in 14-day cycles, with Day 1 being my infusion day. Day 3 is my pump disconnect day. For me, days 1 through 5 are generally pretty good (despite the fact that I’m tethered to the pump for 3 of those days). I’ve talked about the steroids many times, and I’m pretty sure that my 3 days at full strength, and 2 days at half strength, are what make me feel good: lots of energy, good appetite, and although there is still steroid-induced insomnia I’m still able to sleep enough to feel OK.

Ah. But then Day 6 happens. When I said I had to figure out how to write about the bad days, I’m talking mostly days 6 through 9. If you have delicate sensibilities you might want to skip ahead to Day 10. These four days I have delicately referred to as “irritable bowel” days. In reality, that’s bit like calling a hurricane “a bit of a breeze.” Nothing in my six decades of life have prepared me for what those 4 days are like. [As a bit of a side-note, let me talk about how chemo works and how it relates to these days: Chemo targets quickly dividing cells, since cancer cells are quickly dividing. It’s why people lose their hair and have problems with their fingernails – hair follicles and fingernails are composed of quickly-dividing cells. When you kill those cells, you get the expected outcomes. Same for your stomach lining – hence nausea. This is maybe a bit simplistic, but probably sufficient for my purposes.] In the case of colon cancer chemo, the chemicals kill the cells that line the GI tract. Eventually all of that dead stuff has to be eliminated. In the colon cancer community, we call it fire-rhea or chemo-rhea. You are eliminating not only the GI lining, but residual chemicals. (Those would be the same chemicals the require a haz-mat kit in the event of a chemo leak – see the pump post if you missed it.) Let me tell you, it’s a bitch. Throughout the course of this whole ordeal, I’ve rarely had the urge to cry. But during days 6-9 I want to cry, rage, swear, shake my fist at the sky, crawl into a hole and feel sorry for myself, you name it. Yes, I have meds that help, but the bottom line is that the stuff needs to be eliminated. And it’s awful. Frankly, I’m lucky that for me it’s just 4 days. Some people live with this all the time. I can’t imagine. For me it’s not long enough to really have to worry about dehydration or anything really serious. It’s uncomfortable, but not actually dangerous. But it makes for a long, long 4 days. And I’m very unhappy during those 4 days.

Day 10 and 11 are, for me, fatigue days. (I think it was after Round 3 that I previously wrote about fatigue, so forgive the repetition if you read that one.) I suspect it’s mostly my body trying to recover after the previous 4 days. These aren’t exactly bad days. They’re just days I can’t really do anything. Mostly I curl up in the recliner and read. By this point my appetite is usually gone, so eating is a bit of an effort. I have many meals of cereal and (lactose-free) milk during this time. It’s the weirdest thing. Sometimes I’m sleepy, but not always. It’s more a sensation of not wanting to move. Complete inertia. It’s not actually unpleasant, just a bit frustrating. Almost dream-like. It feels like a major effort to get out of the chair to go to the bathroom or get something to eat. I don’t have anything to compare it to, because it’s not like anything I’ve ever experienced before. One of the mantras during chemo is “listen to your body.” So I listen, and do very little for these two days.

Today is Day 12. Generally Days 12 – 14 are pretty good. If you’re doing the math, you will come up with 8 good days to 6 bad days, which isn’t a bad ratio. These 3 days generally come with good energy and appetite, and it’s when I tend to do some baking and good cooking. Today is a bit out of the norm because I discovered this morning that my port incision is red and has a raised spot. Given my fear of infection I sent a message to the doctor’s office along with a picture, just to see if I needed to have it looked at immediately. (If you haven’t used MyChart, or its equivalent, let me say that it’s an awesome tool! Imagine emailing your doctor – with a picture! – and having a reply in a couple of hours!) They aren’t too concerned but will look at it on Monday when I go for Round 6. They are mostly worried that a bit of suture might have worked its way through the incision. I don’t really want to think about what we might have to do to correct it. Anyway, it has me stressed and in a bit of a funk. Unless there’s something bigger to report, I think my next update is going to be about the mental/emotional aspects of cancer and chemo. No question – cancer messes with your head. Right now I’m just angry. That’s not necessarily logical, but there you have it. I’m doing my best to do everything right, and this is what I get. I know of others who have gone through major illnesses basically ignoring all advice and precautions and have come through it just fine. I follow all the rules, and I get (ok, “might have”) an infected incision. Well, damn. Like I said, not logical, and probably totally random, but we feel what we feel and I feel angry. One thing I’ve learned is to feel all the feels and not judge myself. That’s probably good advice for everyone, regardless of situation.

Stage: IIIB

Type: Rectal cancer

I received 5 treatments of radiation, and after my short course radiation, I went through 6 rounds of CAPOX. I tolerated the capecitabine well. The only negative issue I had with it was my food didn’t taste right. I would brush my teeth and tongue often and that helped. The Oxaliplatin, I did not tolerate well. I did not get a port, Oxaliplatin was administered via an IV all 6 rounds, and this didn’t cause me any problems. First treatment, I wanted to ice, but the nurse was fighting me on it, so I didn’t ice my first treatment. I felt fine during the treatment. Afterwards, I immediately felt “first bite” and I had some minor cold sensitivity in my hands. When I arrived home, I took a nap. When I woke up I was violently ill, vomiting constantly over the next day and a half. My husband and I didn’t know that we should have gone to the emergency room after 24 hours of vomiting. I was so dehydrated that I started losing control of my legs and my mouth. Husband took me to the emergency room where I received fluids. By the third day I was feeling better.

For the second treatment, my oncologist reduced my Oxaliplatin dose by 25%. I did ice this time, my hands feet and mouth. I still had first bite after treatment, but did not have any cold sensitivity. I felt fine leaving the hospital, but on the drive home, I passed out (my husband was driving). I felt fine until we got home, about two hours after we arrived home I started vomiting. It wasn’t as bad this time and stopped after about 24 hours.

For the third treatment, my oncologist reduced the Oxaliplatin by another 25%, so I was at 50% of the original dose. He also added a new anti-nausea medicine to my IV, 150mg of Emend. I iced my hands, feet and mouth. I experienced first bite, no cold sensitivity and no vomiting this time! I also had a Signatera test for the first time after this treatment which showed a low level of residual tumor DNA. We stuck with this for the rest of my treatments.

After my fourth treatment, my Signatera came back showing no tumor DNA and this continued through treatments and after. I also found that if I ate during my treatments I didn’t get first bite, so I would eat some light snacks to keep my jaw moving. I stopped icing my mouth after my fourth treatment, the thought of ice was making me nauseous. I couldn’t drink cold drinks for a few days after treatment, but I was ok with that. I continued to ice my hands and feet and had no cold sensitivity. I didn’t have any neuropathy during my treatments, but two months after I finished I started having mild neuropathy (coasting) in my toes. I’ve had it for about three months and I’m hoping it goes away soon. My treatments worked well, I had a complete clinical response. I chose to not get the operation and am following a watch and wait protocol.