My hair is falling out.

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AmyG
Posts: 304
Joined: Tue Dec 25, 2018 8:08 pm

My hair is falling out.

Postby AmyG » Mon May 20, 2019 1:41 pm

So. Idk if this is my normal post partum hair loss or if it's the chemo, but it's coming out by the handfuls.

I'm not even mad. I'll shave it all if I have to, it's just obnoxious that every time i touch my stupid head my hands are covered in hair.

I look really ridiculous in a hat, so I'll have to embrace the bald if it gets to that point! I mean, it's just hair. It will grow back. Maybe with a little less grey. :roll:
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!

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ginabeewell
Posts: 371
Joined: Wed Oct 24, 2018 10:30 am

Re: My hair is falling out.

Postby ginabeewell » Mon May 20, 2019 1:50 pm

My hair thinned substantially on FOLFOX. I didn’t lose all of it and have had good luck with clip on ponytails and ponytail wraps to give me a little volume. Nothing over $45!

I’m not really a hat person either but I don’t think I can rock the bald.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

AmyG
Posts: 304
Joined: Tue Dec 25, 2018 8:08 pm

Re: My hair is falling out.

Postby AmyG » Mon May 20, 2019 2:03 pm

Dude. I'm so going to whack it all off if it comes to it. I used to rock a pixie.

I ain't scurred.

:lol:
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!

User avatar
ginabeewell
Posts: 371
Joined: Wed Oct 24, 2018 10:30 am

Re: My hair is falling out.

Postby ginabeewell » Mon May 20, 2019 4:25 pm

I hope you continue to feel that way but don’t be surprised if you don’t. I had a really hard time emotionally with losing hair and getting a Vectibix rash, maybe especially because my kids were so tuned into my appearance.

I’ve always been a long haired girl, I know I’ll probably lose it all when I switch to FOLFIRI at some point. Maybe I’ll wind up with a pixie by default.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

AmyG
Posts: 304
Joined: Tue Dec 25, 2018 8:08 pm

Re: My hair is falling out.

Postby AmyG » Mon May 20, 2019 6:39 pm

I appreciate the heads up!

My hair is currently channeling Ellen DeGeneres. I haven't worn it long since the late 90s. I just got a fresh cut last week, telling the stylist I was anticipating some thinning. She hooked me up with a sweet 'do.

Now I feel like I just should have waited and saved my money! :lol:
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!

boxhill
Posts: 405
Joined: Fri Apr 06, 2018 11:40 am

Re: My hair is falling out.

Postby boxhill » Tue May 21, 2019 1:15 pm

I think I lost about 50% of my hair on Folfox, but it was even all over so I didn't have bald patches, thank doG. I found that when it really came out was the post pump shower. Depressing! I am a longer hair person, and no way could I do a pixie, and my head is too big for most hats, so I just went with it and kind of kept is brushed back. It was obvious to me, but not to others. When it started growing back in, I was in danger of having an 80s hair band look, where the top part sticks out and the bottom is scraggly. :lol:

A month or so ago I got my son to whack off the bottom six inches, which was noticeably thinner. It's on the wild side, to say the least! Pretty soon I think I'll go and have an actual hairdresser see what they can do.

I admit that it has crossed my mind to be glad that forfiri is not a good choice for me, which is crazy, but don't come between a woman and her hair! 8)

ETA, I bet yours seems worse because its combined with the normal post partum loss. Also, I was told and observed that the folfox thinning tends to more or less stop after the 8th cycle.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

hopefulandstrong
Posts: 58
Joined: Fri Apr 19, 2019 7:11 pm

Re: My hair is falling out.

Postby hopefulandstrong » Tue May 21, 2019 5:16 pm

I've lost somewhere between a 3rd and half of my hair on five rounds of Folfox and one of Folfiri. I had a lot to start with, and most people say they can't tell. I can see pink scalp in all sorts of places, mostly the part. I'm switching to Triplet therapy (Erbitux, Encorafenib, Binimetinib), and I'm not sure what the hair situation will be with that. When I'm feeling really self-conscious, I use hair thickening fibers from Hairology. They work great, but I don't use them much, because they are not great for the scalp.

Like Gina, I'm find this particular side-effect to be among the most difficult to deal with emotionally. Makes me look sick, even on days when I feel great. Gradually, however, I'm starting to think that a "fun" wig might be a way to deal with this proactively. I have a prescription for one. But have yet to go to the store.
54, female
1/8/19 DS Stage 4 with Liver Mets; Successful Colon Resect
2/18/19 Started Folfox -- CEA 70
5/8/19 - BRAF mutation -- switch to Triplet Therapy: Encorafenib, Binimetinib, Cetximab
6/13/19 - CEA dropped from 214 to 22
8/29 - CEA jump to 30-- scans reveal liver spread, though still confined. triplet therapy abandoned; some concern about PIC3 mutation interfering with BRAF treatment
9/1 - 10/4 -- no treatment
10/4 -- folfoxfiri to stem further progression; pump placement in January (hopefully)

Rikimaroo
Posts: 265
Joined: Tue Dec 20, 2016 8:48 pm

Re: My hair is falling out.

Postby Rikimaroo » Wed May 22, 2019 9:11 am

My hair thinned during folfox. my hair started falling out like crazy on Folfiri. So I just shaved my head balled. I am a guy so it wasn't such a big deal. Either way its part of the process it will grow back and you will be str8 balling again Amy. Rock on :)
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left seminal vescial/pelvic sidewall - 10/7/2019 resection surgery, perm bag, requested
FolFiri 11/6 - 5 rounds

Punky44
Posts: 403
Joined: Mon Oct 01, 2018 4:29 pm

Re: My hair is falling out.

Postby Punky44 » Wed May 22, 2019 2:52 pm

My mom’s hair started thinning after round 6 of Folfox and continued after she was done so she bit the bullet and got a wig and it’s fabulous.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: My hair is falling out.

Postby Stewsbetty » Thu May 23, 2019 5:54 am

I started losing large amounts of hair after cycle 2 of both folfox and folfiri. I would say I lost 70% of it over about a a month. Every time I would touch it or wash it massive amounts would come out and it was sore. So I shaved it off. This helped immensely with the soreness. I was totally fine with being bald the first time. It was just a season and my hair came back very nicely within a couple months of chemo completion. The second time it was a lot more emotional. It also took a lot longer to start coming back. So I guess I am saying to be open/prepared for a variety of feelings. :) I do think shaving is with it though if you are having soreness with the loss of hair.

Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability to present
November 2018 CT shows only 1 small tumour left

AmyG
Posts: 304
Joined: Tue Dec 25, 2018 8:08 pm

Re: My hair is falling out.

Postby AmyG » Thu May 23, 2019 8:21 am

Omg. Is that why my scalp hurts occasionally??
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!

cgb13
Posts: 8
Joined: Tue Aug 07, 2018 4:08 pm

Re: My hair is falling out.

Postby cgb13 » Thu May 23, 2019 12:03 pm

I'm a guy as well - my hair definitely thinned quite a bit. I ended shaving my head, didn't look the best, but better than being patchy.

The good thing I can report. After I finished chemo and it started coming back, it came thicker than ever! My previous balding shrank substantially. My family typically has very fine, soft hair. So having thick hair that can stand up on its own now is super exciting for me. If you excited about having thicker hair as I am, things hopefully will get better. I even joked with my Oncologist that I need to do a chemo treatment every few years to keep my luxurious hair.
35yo male - father of 1 (infant)
Dx Stage IIIc - T3N2M0 8/15/18
8 bi weekly FOLFOX treatments done 12/11/18
1/23/19 - 3/1/2019 - Radiation + Xeloda (4,000 mg per day - 4 pills in morning and evening) - 28 days

AmyG
Posts: 304
Joined: Tue Dec 25, 2018 8:08 pm

Re: My hair is falling out.

Postby AmyG » Fri May 24, 2019 7:41 am

It looked like there were small animals in my shower drain this morning. So. Much. Hair.

So far, there aren't obvious patches, but looking at a picture of me from a week ago, you can see the difference.

It's okay for now though, the clippers aren't coming out.... yet.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!

rachelfromnyc
Posts: 22
Joined: Fri Oct 04, 2019 11:32 am

Re: My hair is falling out.

Postby rachelfromnyc » Mon Nov 18, 2019 5:03 pm

Resurrecting this thread because the hair issue is becoming more of an issue lately. Some background- I did 6 rounds of FOLFOX and had hair thinning after the 2nd infusion. No biggie, was manageable. Now I am on FOLFIRI and it's coming out a lot more. Currently on the 4th of 6 rounds but I am also in a chemo for life situation so its troubling. I know I have bigger problems but I always thought that the longer I can look and feel "normal", the better my mindset will be (and that is the hardest part). Some questions:

1. On FOLFOX and because it was summer, I washed my hair 2-3 times per week and hair loss wasn't too bad. On FOLFIRI, I'm actually pretty scared to wash so it's been once per week and I'm very gentle with it. But funny thing is, I got my hair cut for the first time since diagnosis and although I spoke to my stylist prior to explain, she washed it a little more aggressively than I normally would. And since then, hair loss has been noticeably less. Is it better to wash more frequently and scrub more? Maybe it's survival of the fittest and she got all the weak ones out? How often did you wash your hair while on treatment?

2. I noticed that as hair is falling out, new hair is growing in at the same time although not nearly at the same rate. No complaints, but its a little weird styling wise because my hair is now all different lengths. Has anyone else experience this and what did you do?

3. Not a question but an observation: my doctor and her team told me that complete hair loss is a possibility on FOLFIRI. But I've been polling the nurses who actually administer the chemo drugs and they said they have never seen it happen. And these are folks with many years of experience. And reading the message board, I guess each person's reaction is really different.

And lastly, if anyone else has new ideas/suggestions/recommendations, please do share. I did purchase extensions per another poster (thank you Gina!) in case of emergencies but have not used them yet.

Thanks,
Rachel
37 at dx May '19, one month after my bday
5/19: 3.4 cm mass in transverse colon, enlarged distant lymph nodes, innumerable lung nodules; CEA 13.2 ng/mL
5/19: FNA of supraclavicular lymph nodes positive for disease
6/19 to 9/19: 6 cycles of FOLFOX; CEA 3.9 ng/mL
7/19: CEA 4.3 ng/ml
10/19: CT scan shows primary tumor stable, lymph nodes shrinking and disease progression in liver; CEA 4.8 ng/mL
10/19: Start FOLFIRI with Avastin, planned 6 rounds

boxhill
Posts: 405
Joined: Fri Apr 06, 2018 11:40 am

Re: My hair is falling out.

Postby boxhill » Mon Nov 18, 2019 7:05 pm

I admit I STILL haven't been to an actual hairdresser. I'm afraid they will want to cut it all back to the "new" length, and I couldn't deal with that.

I really need to, though. Maybe this week.

Clearly, I am not the person to go to for advice! I hope your hair continues to hold the line.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable


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