Hair loss on Folfox oxiaplatin

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Missy
Posts: 4
Joined: Mon Apr 12, 2021 9:00 pm
Facebook Username: Missy mckinnon

Hair loss on Folfox oxiaplatin

Postby Missy » Mon Nov 29, 2021 10:55 pm

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!
RAS stage IV colorectal cancer with metastasis on liver and bone
Started FOLFORI Jan 2021
Sigmoid tumour removed, bowel resection, liver Mets Removed,lymphnodes removed Jun 2021
Liver Mets returned July 2021
Resumed FOLFIRI Aug 2021 to Oct 2021. (29 rounds FOLFIRI)
5 rounds radiation on femoral neck and L5 on spine Nov 2021
Folfox started Nov 2021

35 year old mother to a 3 year old boy above everything else

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Re: Hair loss on Folfox oxiaplatin

Postby roadrunner » Tue Nov 30, 2021 3:25 pm

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 : )
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

Bpaint
Posts: 68
Joined: Sun Oct 11, 2020 8:54 pm

Re: Hair loss on Folfox oxiaplatin

Postby Bpaint » Tue Nov 30, 2021 8:35 pm

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.
husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
Liver, colon and node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix lungs stable about 6 months; all other areas stable
Start Folfiri + avastin 1/22
Stop Folfiri (lungs stable 6 mos); start Vectibix 7/22
Stop Vectibix 12/22 (lungs stable 5 mos this time)
SBRT on lung Mets scheduled for 1/22, will restart Folfiri

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: Hair loss on Folfox oxiaplatin

Postby ginabeewell » Tue Nov 30, 2021 10:01 pm

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).
Last edited by ginabeewell on Tue Nov 30, 2021 11:33 pm, edited 1 time in total.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

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beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Hair loss on Folfox oxiaplatin

Postby beach sunrise » Sat Dec 04, 2021 6:46 pm

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.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Hair loss on Folfox oxiaplatin

Postby boxhill » Sun Dec 05, 2021 7:35 pm

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.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

Sunnycd
Posts: 88
Joined: Fri Feb 26, 2021 10:36 am

Re: Hair loss on Folfox oxiaplatin

Postby Sunnycd » Tue Dec 07, 2021 8:38 am

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.
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant

Jannine
Posts: 204
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

Re: Hair loss on Folfox oxiaplatin

Postby Jannine » Sat Dec 11, 2021 2:40 pm

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.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear


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