Successfully dealing with 5FU side effects
I am now on my 110th cycle of chemo, mostly FOLFIRI (5FU, or fluorouracil, plus irinotecan, with leukovorin as an adjuvant) but some FOLFOX too (5FU plus oxaliplatin). Every two weeks.
With the help of my team – spouse as caregiver, all those at CINJ – I no longer have mouth sores, do not experience constipation, do not lose 5 lbs or more from Day 1 to Day 5, no more vomitting, and greatly reduced nausea. This is a dramatic change from the first year, when I had to deal with all those symptoms, pretty much every cycle.
I go to CINJ, take a bunch of “pre-meds” (mostly to help me handle the effects of the 5FU/fluorouracil and irinotecan/oxaliplatin), and an hour or so later the infusion starts via a central line/port. When that’s all finished, I am hooked up to a pump which delivers a ~continuous dose of 5FU for 46 hours. Then I go home. This is Day 1. On Day 3 I return to CINJ and am unhooked/the pump is disconnected. And off home again I go. It is usually not until Day 6 that I feel anything close to normal. It’s a two week cycle, though due to holidays and such it’s sometimes 15 days or 13 days. I have also had to delay a week once or twice, due to not being well enough for chemo (platelet count too low – thrombocytopenia – if I remember correctly).
I am reporting my own experiences. While my chemo regimen may be relatively common, in no way am I recommending anything. You, dear reader, should make your own decisions (working with your caregivers and your oncology team). While I am now quite familiar with and awful lot of technical terms (e.g. thrombocytopenia), I am not a medical professional, and have no medical qualifications.
For me, perhaps the most important thing to manage my side effects was how I took my prescribed meds. In a word, take them on a schedule rather than waiting for symptoms.
Ondansetron (“Zofran”) in ODT form (tablet which dissolves under the tongue): take at ~8 hour intervals, starting early on Day 2 (even as early as 2am), usually ending on Day 4 (I get ondansetron/Zofran on Day 1 at CINJ, as part of my pre-meds).
Prochlorperazine: this is my “rescue” anti-nausea med; I take it only if I feel really nauseous despite the ondansetron. It is now many months since I’ve taken a prochlorperazine!
Lorazepam (“Ativan”): once a day, Day 1 to Day 4 (sometimes beyond) at bedtime. I feel this helps with nausea at night, and sleep (really a problem on Day 1 only, due to the dexamethasone I get as one of my pre-meds). I know it has anti-anxiety properties, but as I’ve rarely felt anxious in my nearly five-year journey, I think it’s neutral in this regard.
Isosorbide ER (extended release): one of 5FU’s nastiest side effects is symptoms which mimic the onset of a heart attack, e.g. a tightness feeling in the chest. I usually take one pill early on Day 3, sometimes Day 4. I take a pill on the slightest symptom, and immediately sit down in my fave reclining chair. Unlike all the other meds I take, which were prescribed by my oncologist, I needed to visit a cardiac specialist to get a prescription for isosorbide.
Diet has been by far the most difficult aspect of dealing with 5FU side effects. Unlike meds – where the key was a realization that a schedule is better than reacting to symptoms – improving my diet involved a lot of small steps, trial and (many!) error(s), and is constantly changing.
Perhaps the key was realizing that the almost constant symptom I call “nausea/hunger” was in most cases predominantly hunger. So the most important consequence is to eat! This probably sounds like “well, duh!” to those who’ve never experienced the kind of chemo I’m on … but how to convey just how extraordinarily difficult it is to even think about eating?
“Small meals, often”. Sage advice, but how small? how often? For me, it’s about every two hours. Including at night. From Day 1 to Day 4, sometimes Day 5. And make sure to eat before napping during the day (which I do, sometimes several times, on Days 2 through 4/5).
“Protein and calories” was the answer, from my oncologist, way back in 2015, to the question “what should I concentrate on while on 5FU?” Diary – milk, half-n-half, cream, yoghurt (always full milk, never “lite”), sometimes cheese – and eggs have been my protein (from the beginning, the one things I’ve always been able to tolerate is milk coffee, and most nights warm milk). Various carbohydrates – mostly sugars – used to be my main source of calories, but recently I remembered that fats are the most calorie-dense food group! So, I now have heavy cream in my “milk” coffee (the amount varies), and whipped cream from a can on all sorts of things.
Other than trying really, really hard to eat (or drink) every ~two hours, what I eat is more varied. Of the five tastes (sweet, salty, sour, bitter, umami), sweet is nearly always OK. Sour and bitter rarely OK on their own, but often OK with sweet. Salty, perhaps surprisingly, is usually hard to tolerate, though OK if masked by sweet. And umami? Can’t really say. The list of things we have tried is very long, and, sadly, what worked well last cycle may not work next cycle (other than milk coffee!). Some things which are more often OK than not: “pancakes” (made with an egg) with berries, syrup, and cream; white bread toast with peanut butter; raisin or blueberry scones, usually with cream; apple pie/strudel/danish with cream; scrambled egg (hold the salt!) on white bread toast.
Being able to eat every two hours or so, even if only small quantities – e.g. half a slice of bread, perhaps only a quarter of a pancake – has had some remarkable, good!, effects: no more consitipation (I used to have to take stool softeners or senna), no more mouth sores, more or less stable weight (I used to lose 5 lbs or more, from Day 1 to Day 5), a closer-to-normal Day 5, …
Exercise: BC (before cancer) I exercised regularly (daily work outs) and loved hiking. These days it’s daily walks, mostly locally, of at least half an hour. And some strength training with weights at home. I try to get my daily walk in before going to CINJ on Day 1, and get back to normal by Day 6. On a good cycle I can usually walk around the house for 20 minutes or so on Day 4, sometimes even Day 3. From what I’ve read, this has likely helped me in many ways, including, possibly, helping the chemo keep the turmors from growing.
Sleep: Sometimes difficult on Day 1, due to getting dexamethasone as one of my pre-meds, never a problem Days 2 to 4. I feel that “getting a good night’s sleep” helps with reducing the 5FU (etc) side effects, reduces my recovery time, and improves my general health in time for the next cycle. I have prescriptions for lorazepam (Ativan) and zolpidem (“Ambien”) to help me get that sleep. I take either – never both! – PRN (“as needed”), perhaps once or twice a cycle after Day 5.
Distraction: 5FU really messes with my thinking! So I can’t do anything that requires concentration (beyond 10 minutes say) or “heavy” thinking. Mindlessly watching Netflix is easy, and yes it helps get my mind off the side effects (Days 1 through 4/5). But being more engaged is better, where possible, I have found. So I do jigsaw puzzles! I found an app for good ones for my iPad, as it’s not easy doing real ones with tubing coming out my chest and a pump at my hip! I have learned to avoid engaging too much with people, either in person or online: I know my judgement is totally shot, and – worse – I don’t even know when I’m spouting complete nonsense!
Nails: The cracking and brittleness is one side effect I have not been able to find a good way to deal with. Otherwise, Aquaphor and Udderly Smooth cream are good, for skin side effects too. Yes, I keep my nails short (file, don’t cut), and put paper tape on the worst cracks.
Peripheral Neuropathy: A side effect of oxaliplatin. I take over-the-counter vitamin B6 tablets, but do not know if this helps reduce the side effect or not. I still occasionally get an “attack” of (very) uncomfortable pins and needles in a foot, nearly always at night. I now try to sleep with arms and legs free (nothing pressing on them other than bedclothes). When an attack happens, walking barefoot on a cold surface helps. I’ve tried sleeping with one or both feet uncovered, but it seems to make no difference.