New on here. Question on hair loss

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

New on here. Question on hair loss

Postby Missy » Mon Apr 12, 2021 9:12 pm

Hi everyone,

I am new to the site. I have stage IV colorectal cancer that has spread to the liver. I have been on FOLFIRI for a little over a year and had a removal surgery June 2020. (The doctors removed the mass on my colon and did a resection and attempted to remove all the masses on the liver but didn't get them all apparently so now I am stuck on chemo for live according to my oncologist). My last CEA count was 2.2 so we moved my chemo from every 3 weeks to every 4.

My weird question and it may be silly... I lost my hair the first few rounds of chemo last year (only on my head not my body). My hair grew back slowly but very full and now all of a sudden my hair is very greasy and thinning quite excessively again. Has anyone else experienced hair loss randomly through out chemo and then it come back? The longest break I had off chemo was pre surgery which was 4 weeks chemo free.
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

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

Re: New on here. Question on hair loss

Postby ginabeewell » Wed Apr 14, 2021 12:21 pm

I think hair loss is so weirdly unpredictable. Mine thinned a bit on FOLFOX and again on FOLFIRI. But it was after I discontinued the irinotecan that it really started falling out or rather receding. So I ended up getting a wig after I ended my chemo.

Now it’s growing back super wiry / curly and full. I am glad to have a wig to hide my banshee hair!!
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!

Join me on a lookback of my journey via my Strive for Five on Substack here:
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All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

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

Re: New on here. Question on hair loss

Postby Missy » Wed Apr 14, 2021 7:41 pm

Funny you mention the hair loss after discontinuing the irinotican because I did notice my hair loss was ramped up when I stopped before my surgery. Thank you for your insight!!! I know there is nothing that can be done.. I just have a 2 and a half year old who just got used to moms hair. Thanks again
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

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: New on here. Question on hair loss

Postby catstaff » Mon Apr 26, 2021 8:33 am

My DH has started shedding after two full cycles of folfiri/bev. On folfox his hair basically stopped growing and thinned, but didn't noticeably fall out. It's not coming out in clumps, however, at least not yet. This after the onc claimed that folfiri doesn't cause hair loss.

Many chemos inevitably cause hair loss but it seems to be idiosyncratic with irenotecan/5fu/etc. However, I've seen plenty of reports about hair growing in different in texture or even color after chemo so that seems common. I suppose it just depends on how the follicle stem cells are affected.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-


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