My hair is falling out.

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Amarie123
Posts: 44
Joined: Wed Nov 14, 2018 6:46 am

Re: My hair is falling out.

Postby Amarie123 » Mon Nov 18, 2019 7:09 pm

I’m on chemo for life but have taken oral chemo like Lonsurf since stopping IROX in the summer. I did notice that with irinotecan, my hair thinned out a lot. Same as you, the nurses told me they’d never seen anyone lose it all, however. I never lost so much that it couldn’t be styled and it basically looks decent (although I did start out with unusually thick hair). Like you I think it helped to wash my hair about once per week and no more. Also, I used to blowdry my hair straight but stopped when I started chemo. It’s naturally very wavy so it works for me but I know it doesn’t for everyone. I haven’t used a hairdryer at all since last January. If you do like to dry and style, just be very gentle with the brushing. The positive was it never looked patchy, just noticeably thinner all over. My hairdresser did suggest not letting it get too long as longer hair weighs it down and more could fall out. Not sure if that’s at all true but I have kept my hair about shoulder length just in case.

Vana3
Posts: 7
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: My hair is falling out.

Postby Vana3 » Mon Nov 18, 2019 7:27 pm

I am about to do treatment #7 with Folfox and Avastin. In the last week my hair is falling out pretty badly. I was hoping it was the season change?!?!
I am a long thick hair lady so I am finding this to be really emotional and sad. I also worry how it will make my kids feel. I did go and get it chopped into a bob style and it’s thin but I can still pull it off but my fingers are crossed that this dramatic thinning slowssss down.....
36 year old mom of 3 kids (10 year old twins and a 6 month old)
T4aN2M1
5 cm tumor in cecum removed with clear margins
17 out of 45 lymph nodes positive + td
1 cm omental deposit (removed during surgery)
LVI present
negative for Lynch
prior to surgery CEA level 5, post surgery 4.2
MSS
8/20/19 more scans (CAT, MRI. PET) showed small spots on right lobe of liver, peri aortic LN suspicious
9/04 second round of folfox with Avastin being added on 9/18 (third treatment)
Still waiting for Tumor Biopsy

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ginabeewell
Posts: 368
Joined: Wed Oct 24, 2018 10:30 am

Re: My hair is falling out.

Postby ginabeewell » Mon Nov 18, 2019 8:30 pm

Vana3 wrote:I also worry how it will make my kids feel. I did go and get it chopped into a bob style and it’s thin but I can still pull it off but my fingers are crossed that this dramatic thinning slowssss down.....


My twins (aged 7-8 through my hair thinning) sort of half paid attention for a while. They LOVED the fake ponytail and wraps and my “fancy hair” that added some thick waves - all secured from Amazon for $40 or less (Hairdo brand).

Now it’s starting to get a little thicker but as a result I look like a nutball - think Einstein - and I swear it does not bug anyone but me, even the 14 and 16 year olds in the house are chill about it.

I think as long as you have solutions that keep you happy, the others in your life will just take things in stride!
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: 296
Joined: Tue Dec 25, 2018 8:08 pm

Re: My hair is falling out.

Postby AmyG » Mon Nov 18, 2019 10:36 pm

Only two rounds left and I'm losing a very small amount of hair again. I'd shaved it all off and it's probably half an inch long now? I'm trying not to sweat it. If it comes out in clumps again.....BZZZZZZZZZZZZ! :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

Beccaschocked
Posts: 38
Joined: Mon Oct 30, 2017 7:33 pm
Facebook Username: Becca Fender schock

Re: My hair is falling out.

Postby Beccaschocked » Wed Nov 20, 2019 11:45 pm

I was a bob gal from the start because I have such fine hair. So as soon as it started to thin I went to a pixie. It was a good move for me, I lost most of my hair! Looking back, it was really emotional, but it has grown back and I have pictures to remind me of the battle.
Dx @ 32, mom to 6 week old and 2 year old (now 3 & 5)
3/2015 stage IV colon cancer Mets to liver. CEA > 8,000.
4/2015- June 15; 3 infusions folfoxiri +avastin, 4 infusions folfox
7/2015 colon & liver resection; 6 infusions of folfiri
1/2016-5/2017 NED (5mm lung nodule stable)
10/2017- growing lung nodule 12mm from 5mm-Confirmed recurrence - CEA 2.5
11/2017- lobectomy- no chemo
1/2018- CT & PET back to NED. CEA 1.3; 1.4; 1.2; 1.2.; 1.0; 1.1; 1.1; 0.9
7/18, 1/19, 7/19 clean scans NED

boxhill
Posts: 403
Joined: Fri Apr 06, 2018 11:40 am

Re: My hair is falling out.

Postby boxhill » Thu Nov 21, 2019 9:47 am

So this thread inspired me and on Tuesday I not only got my hair cut, but colored to hide my pretty minor greys. It's a bob a couple inches longer than chin length. The hairdresser totally got my issue with the new growth but desire not to cut back to that length. It looks like it will take another year+ to grow all of my hair out to its current length.

I feel so much better!

BTW, at some point last year in the latter stages of chemo I started using a shampoo and conditioner that really improved my hair: OGX Thick and Full Biotin and Collagen. Unlike a lot of "thickening" shampoos, this one does not rough up the cuticle, and the hair is soft and shiny.
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

tater
Posts: 120
Joined: Wed Jul 19, 2017 5:53 pm

Re: My hair is falling out.

Postby tater » Tue Nov 26, 2019 6:48 pm

So my wife starts FOLFIRI on Monday. She saw some thinning with FOLFOX but she was also severely anemic at that time. I guess reading this post it is true that hair loss is a bigger side effect with FOLFIRI than the other?
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI

Rock_Robster
Posts: 393
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: My hair is falling out.

Postby Rock_Robster » Tue Nov 26, 2019 10:28 pm

tater wrote:So my wife starts FOLFIRI on Monday. She saw some thinning with FOLFOX but she was also severely anemic at that time. I guess reading this post it is true that hair loss is a bigger side effect with FOLFIRI than the other?

It is, I believe about 50-60% of people will experience ‘some’ hair loss with irinotecan, however this could be very mild thinning. Complete baldness is fairly uncommon (<10% I think). I’ve heard if you’re going to lose hair it will be within the first 2-4 cycles. Some people also lose it and have it regrow even while on chemo; others it regrows when they stop irinotecan.

Mine has definitely thinned after 5 cycles of FOLFIRI, but not to the point of being an issue - I’ve changed my hair products and style a bit to accommodate it.

Best of luck to you guys,
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

texazgal
Posts: 147
Joined: Fri Sep 28, 2007 4:40 pm
Location: central Texas

Re: My hair is falling out.

Postby texazgal » Wed Nov 27, 2019 10:17 am

I just noticed this thread. Back in May it was not an issue for me. I never had chemo for the colorectal cancer, just surgery. Then, in June of this year, I had very bad news(didn't know how bad it was at first). During an endoscopy/colonoscopy a mass was found in my esophagus and it was stage IV. So this summer was spent doing 5 chemo rounds and 28 radiations. The chemo is different for esophageal cancer. Carboplatin + Paclitaxel. And the hair started falling out. It's coming back, about an inch now, pure white. Not all came out, about half I'd say. I keep a short do and blowdry it. I timed the last blowdry and it took a minute and half to dry, so it's really thin and yucky. And it used to be wavy and be able to be styled some, now it's poker straight and sticks out. Can't do anything with it. Don't know how its going to be when it comes all back(if it does). I had a PET scan about a week ago, and metastases were found so probably more chemo in future. Waiting to see oncologist.
DX rectal cancer Aug 04
Surgery Sept 04, perm ostomy, "BarbieButt" Sept 23, 04.
Dad passed '93 CC
Gdad cc '68, uncle cc '69 too much CC in fam
DD 42 yo/w/2 polyps removed

AmyG
Posts: 296
Joined: Tue Dec 25, 2018 8:08 pm

Re: My hair is falling out.

Postby AmyG » Wed Nov 27, 2019 9:49 pm

I'm going to look for that shampoo and conditioner. Having a tough time emotionally this time around with the hair loss. I know it will grow back and I only have one treatment left, but this still sucks.
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

Rock_Robster
Posts: 393
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: My hair is falling out.

Postby Rock_Robster » Thu Nov 28, 2019 1:55 am

AmyG wrote:I'm going to look for that shampoo and conditioner. Having a tough time emotionally this time around with the hair loss. I know it will grow back and I only have one treatment left, but this still sucks.

The right products can make a big difference! And if something small can make this whole thing a bit more bearable, then way not.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

AlexandraZ
Posts: 105
Joined: Fri Aug 23, 2019 8:25 am

Re: My hair is falling out.

Postby AlexandraZ » Thu Nov 28, 2019 2:27 pm

What worked for Jesper when his hair thinned out like crazy in the summer was saltwater spray and blowdrying his hair. I know he's a guy so it's not the same, but it definitely gave his hair more volume and texture and hid his scalp. He'd just spray the saltwater in his hair after washing it and then blow-dry it. It made a big difference.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Rock_Robster
Posts: 393
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: My hair is falling out.

Postby Rock_Robster » Thu Nov 28, 2019 3:08 pm

AlexandraZ wrote:What worked for Jesper when his hair thinned out like crazy in the summer was saltwater spray and blowdrying his hair. I know he's a guy so it's not the same, but it definitely gave his hair more volume and texture and hid his scalp. He'd just spray the saltwater in his hair after washing it and then blow-dry it. It made a big difference.

This works really well for me too! I use a sea salt spray, along with a “plumping” shampoo & conditioner (Kevin Murphy). If you use these, then blow dry really well, then use a matte styling product (like a clay, powder or matte wax), it can make a huge difference. Anything that causes hair to stay damp or ‘clump’ (like mousse or gel) is going to make it look thinner. I know it’s not an option for everyone but I also cut it very short on the sides so any thinness there isn’t obvious.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal


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