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Hair loss

catherine58's picture
catherine58
Posts: 92
Joined: Feb 2007

I visited the wig shop today, just in case, and wondered how many of you ended up wearing one after six months on Folfox? I think it’s actually the 5-FU that causes hair loss, and I gather it’s more likely to be thinning/bald patches than total alopecia, but I think I’m too vain to face the world in such a scraggly state. I had lunch with a friend yesterday who is mid treatment for breast cancer and it gave me quite a shock when she took off her wig to reveal a shiny scalp with a few tufts of wispy grey hair. Is this what I should expect? I am feeling great at the moment (five weeks after surgery), in fact looking better than I have for ages, and it really depresses me to think that I will soon be this sickly, balding invalid with a mediport protruding under my collarbone (I start on Folfox on April 17th).

Even if one keeps some hair, is it possible to colour it during chemo? I have had blond highlights for as long as I can remember but fear the real colour is probably an unflattering pepper and salt.

Catherine

PS Does anyone know how to stop apostrophes appearing like this: ’ ? I have a Mac which might have something to do with it.

KierstenRx's picture
KierstenRx
Posts: 249
Joined: Nov 2006

Catherine,
I am 8 weeks post surgery and have completed 2 treatments of FOLFOX. Are they going add Avastin to your treatment??? They are adding it to mine next treatment. My oncologist said I would definitely have some hair thinning, but would not lose my hair. I have noticed so far that I am starting to shed more hair daily, but it hasn't been like your friend who is going through breast cancer treatment. I decided not to do the wig thing reguardless of what happens. I am however going to the hairstylist tomorrow to have my hair cut shorter (shoulder length right now). I think it will make the thinning less noticeable. The only place I have really noticed it getting thinner is in the back. I'm not sure about coloring, but I am half tempted to get a few highlights. I have always been a blonde, but decided before surgery to dye my hair closer to its natural color just in case I couldn't do anything during chemo. I didn't want major roots. Anyway with all we have been through I understand your concerns. They have been mine as well. Believe it or not I look better than I ever have and get tons of compliments of "you look so good" (lost 98 pounds over the past 1.5 years). Have to admit like buying the new clothes, don't necessarily like the way I lost it though :) You take care.

Kiersten

Faith4Cure
Posts: 405
Joined: Mar 2007

Hi Catherine
My husband has finished 7 out of 8 folfox treatments(3 months worth)His hair is just starting to get a little thinner now. He didn't lose any patches, just general thinning overall. I don't think anyone but him or I can even notice. I know you mentioned that you would be on this treatment for 6 months, so I'm not sure what that extra time might do. I know that our doctor told us that breast cancer patients lose their hair more than colon cancer patients do. I'm sure the different chemos can have a different effect on everyone, but I would think that you would not experience too much thinning for at least a couple of months.

Glad you are feeling so good right now. I would ask your doctor about coloring your hair. I know if you feel good about yourself it can help your whole attitude. Good luck and keep that positive attitude!!!

Faith

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hi Catherine -

One of the first things my colorectal surgeon told me about chemo was that I "would not lose my hair". It really sounds dumb, but I was so happy at the time that he told me that!

My oncologist told me it was "extremely unlikely that I would lose my hair".

My best friend in the whole world wanted to take me "wig shopping". I told her how nice that was, but we'd have to do something else to bond over this cancer experience (like dinner at a nice restaurant - which we did!).

I had Xeloda/oxaliplatin/Avastin. (Xeloda is the oral drug that is metabolized into 5FU).

I had 6 cycles, 3 weeks apart as is typical for Xeloda (except a couple of times when it was extended a week for side effects and vacation). After my 4th cycle I started to see some hair tangled around my hands when I washed my hair. But nothing anyone could notice. I think I could have had the same chemo for a lot longer and not noticed any serious hair side effects.

Hate to admit it, but yes - I did color my hair during chemo - and my hairdresser had no clue (which is good news, right?)!

i hope this helps. Breast cancer patients always lose their hair - our chemo is different and while hair loss is possible, it is really not the norm.

I wish you the best
Betsy

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

The only time I lost hair was when I was taking Camptosar (CPT-11). I never went bald, but it did come out a lot when I showered and brushed. When I was on Xeloda and Oxaliplatin I lost no hair and lost none on 5FU and Avastin. Good luck. You should be ok

Kerry

moniquebar
Posts: 57
Joined: Jun 2006

Hello Catherine,

Following is a link to a previous post on this forum regarding hair loss.

http://www.acscsn.org/Forum/Discussion/thread/view?
lid=csn:rel:feworks1034215697001168710313&msgrid=3

A few more things: most people I know who have bought wigs rarely wear them. That said, it might be nice having a safe guard. I too visited a wig shop, but once I looked at the price tags I decided to forgo a wig and instead wore baseball caps for the last two months of my chemo. Plus, my boyfriend seemed a little too enthusiatic about a wig, which was somewhat worrying (joke). Although some people lose some of their hair while on FOLFOX, the hairloss is not nearly as radical as those receiving treatment for breast cancer. I doubt very much that you will look like a sickly, bald invalid and if you already have thick hair then it is likely that no one will notice the hair loss, if in fact you have any. From what I've read, it is not recommended that people dye their hair during chemo. In fact, I think that one is to stave off dying their hair for six months following treatment. I too went from a blonde to brunette in a matter of months.

I also have a Mac and have found the only way to avoid the annoying symbols is to avoid quotation marks and conjunctions. As a result my posts sound a little formal, as I am typing words such as I am as opposed to I'm.

Best,
Monique

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

Catherine,

Vain or not, I think we want to hold on to some sense of normal and losing our hair is just one more blow.

I cut my hair very short before chemo "just in case". I didn't hardly lose any.

My chemo nurse said that there was a slight chance that I would lose all of my hair; a good chance that I wouldn't lose any hair, and a great chance at losing some hair, but typically only enough that me and my stylist notice. I had very little, if any, hair loss. My stylist had a wig in reserves "just in case" but I never had to purchase it.

moniquebar
Posts: 57
Joined: Jun 2006

I just noticed that there were no annoying symbols in my message to you. I wonder if it's
because I typed directly into text box, as opposed to cutting and pasting from a word file?

Monique

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Hi Catherine: Like Kerry, I had no hairloss with oxali/xeloda/avastin. However, I am now on Folfiri and my hair starting falling at around the 6th round. My onc told me she was surprised it took so long. I once had a thick head of hair and now it is pretty thinned out. I did buy a wig (which cost me a fortune) and I've only worn it twice. I'm guessing I'll be wearing it more in the future. As for colouring your hair, I was told by my nurse not to do highlights or use any colour with peroxide. So I stuck to the dark browns to hide the grey. Monica

83popsong's picture
83popsong
Posts: 28
Joined: Apr 2006

I had FOLFOX for 10 months (6 week break in the middle for surgery) and didn't lose much hair. It did thin out a bit, but not in patches. If you wind up on Erbitux, I would recommend Head & Shoulders for sensitive skin to help take away some of the itch.

I have not found a way to deal with the ' and I am on a standard 'ole PC.

--Eben

CAMaura
Posts: 719
Joined: Feb 2005

Hey - I was on Folfox and my hair thinned, but I did not need a wig. I think I was the only person who noticed the thinning. My eyelashes thinned a lot too! As far as coloring, I did color my hair - but less often. I had it highlighted too. I guess I did it when I felt like alift and when I felt good enough to get out.
Hang in there, and I probably would not buy a wig before you need it. Supposedly, more hormone-based cancers have chemos which produce a lot of hair loss...
Take care and keep us posted about how you are feeling - Maura

crazylady
Posts: 544
Joined: Jun 2004

Hi Catherine,
I have been on Xeloda, Folfox and Folfox + Avastin and never needed a wig. My hair has thinned and I've had to stop dying it because of scalp irritation caused by chemo. I seem to be the only one that can tell that I have less hair than I did before.
Take care,
Jamie

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I bought a wig after my rectal ca dx, didn't need it after 5FU, carboplatin. Then treated for breast ca (the one you DO lose your hair with), wore the wig for about 1/2 hour, ripped it from my head, vowing never to wear it again.

This is such a personal choice, I have some dear friends that would not think of leaving home without their wig, even tho they have hair remaining.
I had LOTS of hair to begin with, had it cut short so that it wouldn't be as hard picking up the stuff on the floor (4 inch length, instead of 12 inch strand). I'm not going to tell you I didn't lose, but for the colorectal chemo, it truly just did thin.
Bald, I just wore my pink AND my blue ribbon pin as I went out...only time I wore a hat was when it was cold. Nice that it is so accepted now to see a bald woman walking with confidence!!!!

Hugs, Kathi

taraHK
Posts: 1961
Joined: Aug 2003

I had hair thinning. Bought a wig and never wore it. (I don't begruge the money as it gave me comfort when I needed it). Eventually I cut my hair short -- looked better that way. I've read that you shdnt dye your hair but I did anyway -- important for my morale! (I'm an artificial redhead). However, because your hair essentially stops growing, didn't need touching up very often -- no 'roots'! I found the hair thinning thing difficult emotionally -- one of the few things I cried over. On the up side, didn't have to shave legs/underarms for months. Thinning eyelashes/eyebrows also. Good luck to you. I've never heard of a colorectal cancer pt on 5FU/folfox-type chemo who lost "all" their hair. As others have said, it's not like the breast cancer chemos.
Tara

AnnieM939's picture
AnnieM939
Posts: 38
Joined: Aug 2006

Hi Catherine

I have just finished up 12 cycles of 5-FU (I love that it's FU)Oxaliplatin/Avastin/Leucovorin and did not lose all of my hair. It was shoulder length when I started and back in December I had it cut into a shorter "bob" cut, (about 2 inches below my ears). I did have a lot of thinning when my hair was longer, but once I cut it I noticed the thinnnig was next to nothing. My hair is SO dry though, that I don't dare color or highlight or anything right now because I'm sure it would cause more damage. My Oncologist had told me prior to starting treatment that my hair would probably thin, but that I would probably not lose it all (and she was right).

As far as the port goes, my does not protude at all. In order for the nurses to give me treatment, I actually had to be in a reclining position in order for my port to "pop up" so they could access it.

Best Wishes to you. I'll pray for you.

Annie

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

Hi Catherine,

The colon cancer chemo isn't nearly as hard on hair as the breast cancer chemo. I had 6 months of Folfox. My hair thinned but I didn't need a wig. I just had it cut short so it still appeared normal. I think all of the missing hair grew back afterwards. Don't worry, I don't think you'll look sickly or balding. A friend of mine told me that she thought of her protruding mediport as her 3rd nippe :-)

I stopped hair coloring when I was on chemo. You just never know about drug interactions. Also, your liver will have so much to deal with already, any other toxic load (junk food, chemicals, alcohol) will just add on to the load.

That said, I used an Italian all nature hair color before. Maybe organic, vegetable dye is a good compromise?

The ’ is very annoying. They only happen when I write the text elsewhere and copy them in. This editor is pretty under-powered. It just can't deal with special characters.

Cheers,
Ying

jams67's picture
jams67
Posts: 927
Joined: May 2006

My hair is short and very thick so it only thinned a bit and was very slow growing. I also lost a lot of my eyelashes, eyebrows, nose hair, and other body hair. Without mascara, it cuts makeup time down. I decided that I probably was way too vain! Maybe God was trying to tell me something. I did think about a wig when some of my hair fell out, but I'm so glad I didn't purchase one because it wasn't needed.
Jo Ann

Arex630's picture
Arex630
Posts: 8
Joined: Feb 2006

I did 6 months of FOLFOX with Avastin and had no problem with my hair (I even kept bleaching it!) however when I had a recurrance last August and started on FOLFIRI with Avastin I started losing my hair with the first treatment and was near totally bald ALL over by the 6th treatment when I had to stop due to a chest infection. Now my hair is growing in - approx. 1/2 inch long. OH well at least I look cute with really short hair!!!
Don't know how long I'll keep it as I'm awaiting results of a bronchoscopy I had yesterday and have a cyscoscopy scheduled for Tuesday to see if I'm having another recurrance.

catherine58's picture
catherine58
Posts: 92
Joined: Feb 2007

Thank you all so much for such reassuring and practical advice. I wish I had time to write to you all personally as I can't tell you how much you have helped me. I think I'll put the wig on hold.

Arex630 - I'm so sorry about the recurrence and will keep everything crossed for your test results.

Catherine

Arex630's picture
Arex630
Posts: 8
Joined: Feb 2006

Thanks Catherine for keeping everything crossed for me! I really believe good thoughts do help!!
I do recommend you have a hat on hand so if your hair does thin you can protect yourself from sunburning your scalp. Believe me that really hurts!!
Aleda

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