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Question for the ladies

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

I've had only 2 infusions of FOLFOX and my hair is falling out like crazy. When my doctor said thinning I was ok with that but I think her definition of thinning is very different than mine. I don't want to sound like a brat but I can't grasp the idea of going bald. Please share with me how you were able to cope. I know it's just hair right but really when does this cancer stop taking things away from me?Thank you

damama24
Posts: 175
Joined: Nov 2009

I wish i could tell you something helpful. I am receiving folfox also. I will be receiving round 7 tomorrow. My hair did thin but not a whole lot. I'm sure some one can give you better advise than me. I wish I could be more help. Deb

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

sorry...me too....when I was on pure 5fu I lost my eyebrows and lashes.

when I was on xeloda and oxy my hair fell out, got quite thin and sort of burned looking...really dry. I bought some really expensive shampoo ( never would do that normally) :)

but mine never went truly bald

hope someone can help

mags

claud1951's picture
claud1951
Posts: 429
Joined: Jun 2007

I was on Camptasar, and like you said, the information said that my hair could "thin". You might as well say it fell out, however, I was not devastated at all.

Someone, on here (and I don't remember who) said to me: "That is your badge of courage"
From then on, it didn't bother me.

Also.....my brother said,,,just wear lots of make-up and BIG earrings! You know what? I did! Ha
Actually, people will be intimidated by you if you go into public with very little hair. It shows them what a strong person you are. I did not like wigs. I tried one once and that is the only time I wore it, once. Either hats or nothing (except big earrings)

Actually, I took pictures every step of the way. That and writing emails to my family and sending them pictures (those family members that were not close to where I lived) was my therapy. I'd even take pictures at my worst..and send them to family.

My hair has grown back and all is well.

Best of luck to you. Please don't fret...you lose so much energy when you do. Just move forward and wear that Badge of Courage with pride!

Claudia
Stage 3
NED 2 1/2 years

PS..I don't know what stage you are in losing your hair,,,but you might think about buzzing it. Get it over with. And.....you'll be so happy that you don't have to deal with hair for a while >>Grin>>

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

When I was on folfox,it thinned some,
in the beginning ,then leveled off.
But I never went bald.
and no one else seemed to notice.
try NIOXIN shampoo and scalp therapy,
I got it from my hairdresser.
'they' say if you keep your scalp cool,
it helps slow hair loss.
the same thing happened to my sister when
she was on chemo for pancreatic cancer.
I think you notice it more because its your head
and you are watching for it.
good luck
Kate

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

I've noticed it falls out more when I take a hot bath or shower so I think your right about keeping my head coo. Hopefully I will be like you and it will subside but either way I think I'm accepting it. I mean what will worrying do for me it's going to fall out wether I want it to or not. Thank you for your input:)

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

Your response is exactly what I needed to hear. I'm 27 and use to pay so much money on my hair looking back now it makes me cringe. Therefore, I'll take it as a once in a lifetime thing to try. It's not very often adults women can get away with a bald head. And your right about not worrying about it it's completely out of my control my worries won't make it not fall out!:) thank you again it means a lot to me when someone shows me the light in my tunnel:) may god bless you

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Hi, I seem to be a person to whom "it will thin" means 9 out of 10 hairs will fall out! My didn't "thin" until I went on irrionotecan, but I did have it buzzed as it was so ugly in the "thin" state! I have a wig, but hate to wear it, so have lots of fun scarves and hats! Sometimes , when the weather was warm, I made the tips of what was on my head, blue or orange! That was fun! Well it finally started to grow back, even while I was still on chemo, then 2 weeks ago we doubled my chemo, and you guessed it...it has "thinned" again! Oh well, I don't worry about wind! Just have fun and be confident, as my son said..You didn't do anything wrong and if people don't like it, that's their problem! Blessings on you! Jean

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Look young lady...John Nimmons did this for Mrs VickiCo when she started losing her hair as an act of solidarity and it has stuck with me as the utmost act of kindness and sharing I have ever witnessed in 2 people that had never met. She started losing her hair and like you was quite upset and he shaved his in her honor to show his love for his fellow survivors.
If it would make you feel better then I will honor you in shaving mine in your honor if you decide to do it. There is no shame in having this disease and we do what we must to keep a positive attitude and I would be honored to be a part of "walking with you" during this trying time, when you get ready to go for it let me know and its done. Anyday will be fine and I will do it on the same day as you if you indeed have it done. My hair is about 4-5" long now so yeah its gonna be a big change for me, but I think that you and I both are up for it so "lets get this party started"................

Clift AKA ...Buzzard

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thready's picture
thready
Posts: 475
Joined: Sep 2009

My hair is thinning, I get treatment #4 tomorrow. I am hoping it slows done or stops thinning, but if I have to go bald I will. If it gets seriously thin the lady that cuts and colors my hair said we will cut it a bit short and make it really curly.

Jan

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

So, not only does Buzzard have a wise soul,
he also has a BIG heart!

Lilmiss,
I just started on irinotecan
and they said I may lose my hair.
If I lose more than I did on folfox,
I'm going to buzz my head too.
I said on an earlier post,that
I would post a picture.
I'm just glad it's winter so I can wear hats.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

My second cycle (at least I think it was the second), my scalp hurt a lot (like a bad sunburn), and I lost a lot of hair. My hair is very thick to start with. For a few weeks I was losing hair at about 4 times as fast as normal. So I figured at that rate I'd end up bald. But it really slowed down. I am still losing it a little faster than normal, but since mine is so thick, no one notices yet. I can tell - especially when I run my fingers through it, or when I wash it. But others can't tell.

The good news is the pesky hairs on my chin aren't growing! LOL!

I am blessed with a wonderful daughter that cut her hair before I started treatment. It was past her waist, and looked just like mine did in my 20's. I have 4 big ponytails to use for a wig if I should need it. If I don't need it we will donate it all to Locks of Love.

If I lose my hair, that will be the very least of my worries. A lot of other side effects are a LOT worse...

I hope you don't lose your hair, but if you do, it will grow back. Some people like their hair better when it grows back - sometimes thicker or with more body than it used to have. It could even be a good thing in the end...

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

My hair did thin alot on Irinotecan, but I am on my 16th treatment, and still have not gone bald. When I saw all the hair falling out in the shower, you can believe the tears started flowing, long, thick clumps of hair, in my hand, and I just bawled.

I told my daughter I was going to buzz my head, when someone on this board told me NOT too..that I wouldn't go bald, my daughter (14 years old) told me she didn't want me to go bald yet, she wasn't ready, and I said ok, instead, I had her cut my hair up to my shoulders, because I figured the weight of my hair was also a reason it was falling out, because it was thick, and by my 7th or 8th treatment, my hair wasn't falling out anymore, maybe just a couple strands here and there, I still get it, but you ought to see all the hairs growing back now, and while I'm still on Irinotecan, so it will grow, once it comes out, and can while still on chemo...

I also went into Claire's, Hot Topic and Icicles in the mall, and got some very cute hats, that my girls just love as well, fedora hats, fashionable hats, that they say look really good on me!! My hair is growing back, and so will yours!

Hugsss!
~Donna

P.S. Bro, you better not shave your head, at your age, I'd be afraid that would be it with the hair, it won't grow back LOL! (Just Kidding Buzz) LOL

Janet3
Posts: 61
Joined: Aug 2009

I know this is easy for me to say, right. My mom is on modifed Folfox 6. We were told the 'best' thing about this was that hairloss is not a side effect. She said she didn't care, she'd trade her hair for life any day. After the second dose she lost quite a chunk of hair - all at one time - it just fell out, one whole section. She tried to talk tough and maintain her 'trade hair for life' attitude. She has really long hair so she just parted it on the other side, fluffed it up and nobody noticed. When it came time for the third dose, she was a little nervous. She actually has a huge attachment to her hair, it really is a big part of her self-identity. You know what, no more hair loss since. She'll get the 9th dose next week. I know this doesn't mean much coming from me, a caregiver, but try to focus on the more important things. Your life truly is more important than your hair.
Janet

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

I am not my hair,
I am not this skin,
I am not your expectations, no, no.
I am not my hair,
I am not this skin,
I am a soul that lives within.

~ India Aire

Hi Lil' Miss!

So sorry you have to go through this, but just know, you WILL get through it.

I had some hair loss, mostly after the first two treatments, and then it slowed down and leveled off. It seemed the worst of it was the first several days immediately following my infusions of Oxaliplatin. I had it cut shorter between treatments 2 and 3, and my hair stylist suggested that after each treatment I put it up in a loose pony tail (all elastic bands-no metal clips) and not wash it for a few days. It was good advice-it seemed to help.

When my hair grew back it came in much darker and really curly! I used to spend big bucks in the big hair days of the 80s - 90s (the bigger the hair, the closer to God). Now thanks to chemo it's naturally curly and I love it!

When it started falling out I was actually more concerned about losing my eyebrows. My mom lost her hair and eyebrows to chemo and she would just draw her eyebrows on each day. I wasn't confident I could do it well. I was worried I wouldn't get it right - draw them arched too high and I would look surprised or scared, draw them too close and look mad, one higher than the other, quizical, too far apart would make me look kind of dullard... Thankfully, I didn't lose my eyebrows.

Hopefully you will not lose all your hair, but if you do, just know that you are not your hair - you are so much more - and now, you are a SURVIVOR!

Click on this link for ACS's resources for hair loss:
ACS TLC Catalog

You can request a catalog be mailed to you.

Hugs! Katie

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