The Colon Club

Hi everyone,

I had to switch from Folfiri after 29 rounds to Folfox. The nurseroday said I would have hair loss on it. Is this a common side effect of Folfox or just oxiaplatin in general? Are there any other notable side effects? Thanks!

My hair thinned and turned white (from white/grey) on FOLFOX. It was full before therapy (though full for a 55-yr. old, not full for a 18-yr.-old). There was lots in the comb during treatment, but I never went bald or even close. After chemo it came back to former thickness, perhaps thicker, and (weirdly) came back as black (with some grey). Very odd.

I get the impression this is a YMMV effect.

FOLFOX/Oxaliplatin has some significant side effects. For me the big ones were difficulty holding/touching cold things (not too bad, tolerable, but used gloves when reaching into the freezer), first-bite sensation (pain near salivary glands (sides of face) when first eating (really painful but lasts only seconds), general fatigue, crazy liver enzymes, really low WBC counts (Neulasta helped 100%). I had a lot of arrhythmias as well (not sure if from 5-FU or Oxi or both, but determined to be benign). Really unpleasant GI stuff (no nausea or diarrhea, but just general
“Yuck” feeling often). Eventually you may get numbness, tingling, or pain in hands or feet (neuropathy). That’s generally regarded as the dose limiting side effect.

That’s what I recall for now. It wasn’t as bad as it sounds (most days, anyway : )

My husband had hair thinning, but not total hair loss. It has grown back a bit since he’s been off Folfox. (His eyelashes and eyebrows are crazy thick on Vectibix, he has to trim his eyelashes every week.) The worst side effects for him were the cold sensitivity and general nausea and fatigue. But he was usually able to bounce back the week after treatment —the off week— and feel good enough to work and exercise.

I lost more hair on FOLFIRI than I did on FOLFOX. In both cases, though, I had thinning vs complete loss. Just feels like FOLFIRI was more of a noticeable impact on my hairline and I think the texture changed more with FOLFIRI than FOLFOX, as it is growing back as chemo curls this time around.

I did 19 of FOLFOX and 17 of FOLFIRI (although dropped the Oxi and the IRI in both cases some rounds in).

On folfox I began to experience hair loss. Coconut milk as conditioner did the trick for me. It is full of vitamins and minerals. You might want to have your vitamin D and B levels checked.

I experienced significant hair thinning on FOLFOX, maybe 30%? But it was kind of even, not falling out in clumps and leaving bare spots. They told me that it would typically slow down or stop at about the 8th cycle, and that is roughly what I experienced. I was beginning to wonder if I was going to need a topper, but it never happened.

My hair was longer that shoulder length to start with. Periodically I whacked off the bottom few inches, which had grown scant. Eventually it grew back.

I experienced a lot of hair loss on CAPOX, but didn’t lose it all. At some point, I wondered whether I should shave it all. I had/have long hair, and kept it that way so that I could have a loose braid and not have hair falling all over the floor and to avoid matting (the texture became very thin also). I washed my hair once a week and changed my pillowcases to silk.
It’s been about 5 months since chemo, and while the texture seems to be back to normal, I am still losing hair, but not to the extent I was losing w chemo.

Before you start, I would recommend cutting your nails short. I didn’t have long nails, but it did go slightly above the end of my fingers. Problem was that I was using lots of hand cream to prevent HFS, but didn’t realize that the cream was not reaching in the crevice where the nail meets the skin. Well, that area chapped, and bled and it was very very painful. I basically had to tape each one of my fingers to try to “glue” the skin back.

I actually stopped losing my hair even a normal amount when I was on Folfox, and my hair quit getting dirty, too. Like, there was no hair in the drain in the shower, no hair in my hairbrush after brushing my hair. And I could be on day 5 or 6 without washing my hair and not be able to tell that I hadn't washed it that same day.

I have never heard of anyone else having this experience, but there it is.

I also had the cold sensitivity, first bite (although that faded maybe 2/3rds of the way through), fatigue, low WBC counts, lack of appetite, sneezing during infusion, and neuropathy. The oxaliplatin was cut down and then eliminated as the neuropathy got worse. I still have neuropathy but it is not so bad that it's intolerable. Side effects are not consistent throughout treatment; they come and go. The neuropathy is the big thing to look out for.

I worked maybe 6-7 days out of every 2 weeks. I was all right while hooked up to the pump, then got fatigue and felt like crap for a few days after disconnect. The "off" week I'd feel more like eating and try to make up for lost calories by eating more when I felt good. I never had a problem with nausea, and was very grateful for that. I did have some trouble with specific things tasting completely wrong; I think at one point I had a bite of bell pepper and it really tasted like I was eating mud that something had died in.