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Yikes hair!!!

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

OK, so I've read that hair thinning (up to 50%) can be part of FOLFOX. Last treatment (#2) I really starting to notice hand fulls of hair. So, I starting only washing my hair once or twice week and using hair spray to try and glue my hairs together to keep them on. I have really fine (not thin ... but skinny - baby fine) hair so it doesn't take much to make a difference. Last weekend I emptied the vaccuum cleaner and it had more of my hair in it than my dog's! This round it's been even worse. I hardly have enough hair on the sides to cover my ears eventhough it is a good medium/long length. someone please assure me that the research I've done is true and that it won't be more than 50% hair loss with FOLFOX ... UGH!!!!

BUT ... on a positive note: thank goodness that the oxy pins and needles don't happen on your butt because .... heck the toilet seat sure gets cold!

jararno's picture
jararno
Posts: 189
Joined: May 2010

Lori,

I never lost my hair or really had any thinning ( I had already bought a wig and a turban thingy with some hair on it just in case ). I have rather thin hair these days, but I was pleasantly suprised that it didn't fall out. ( I need a real hairdo, but can't stand the smell of hair salons )

Hope you keep your hair, but there are lots of cute wigs out there!

Take Care,

Barb

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

I'm thinking I might get a wig just to keep my head and ears warm!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

hair, yea! maybe the 50 % but kept enough to can dissimulate it, actually nobody notice it!
Any way you know.... buy a good tapa!

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

Tapas for everyone! Tapa tapa tapa LOL

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

...but Folfiri will finish off what the Folfox couldn't.

I'm getting in bad shape now and with Folfiri starting back in a few days, I could be getting my head shaved by the end of the year, or early next year for sure.

I've got a plan and a special post for that when it happens.

It does get to you - I guess it's because it's our of control, and we all love to be in control of our lives, right? LOL:)

-Craig

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

Yes, it's definitely a control issue. I just hate it when cancer gets to control one more thing! And, please don't anyone take offense ... but, it's a daily reminder that I have cancer. If I can keep my hair and my weight up then maybe I won't look like a cancer patient?? I think that's even more true for the females. It's sort of in style for men to shave their heads right now. I don't want to give anything else up to cancer. Sometimes, I'd just like to forget for a little while.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

It really does suck when we lose ANOTHER thing to the beast. It seems silly, but you are so right, when you think of a cancer patient, you picture a thin, bald, sickly person and it sucks when that's what we see when we look in the mirror! I found that I did eventually get used to it, but I still found myself crying sometimes when I would get home; not only was I bald, but i had the round face of steroids. When I was on FOLFOX, my hair only thinned, but I wound up having to shave it when I was on FOLFIRI. I also have thin hair and it just doesn't leave much before the razor needs to come out! I did find that when it grew back in, it grew back in thicker! There's one of those silver linings! Yes, admittedly most of the new hair that grew back in for me was white, but hey, easily covered with dye! :) I sure hope you don't lose any more hair, but if you do, there are so many ways to help keep the head warm and help us to hold some dignity. I knit and crochet a lot and just made hats to go with my outfits! I bought the nicest, softest yarn, in my favorite colors, and it really helped! Especially in cold weather!
mary

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

I haven't crocheted in years but, it;s funny you mentioned it because it's been on my mind lately. I've thought it might be a good thing to do while sitting for 7 hours at the infusion clinic. Maybe you were the angel that was sent to let me know that yes, I should start again. Thank you

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I LOVED to make caps while I was in treatment, and while I was at home recovering! I would bring them in for others to enjoy as well! Good luck getting back into it, it's so much fun! :)
mary

Lovekitties's picture
Lovekitties
Posts: 3348
Joined: Jan 2010

Here is an idea for a new business for you...Blue Star Creations...named for the logo for colorectal cancer.

For the days you want to just pop out for a quick run to the store or just a drive or when the wig is in for styling...make up fasionable hats which have hair attached inside between the crown and the brim...you could even make it so that the hair is detachable so that one day you could have brown hair, the next red, the next blond. You could have some with bangs..some with a sweep...some straight...some curly!

You could even make turbans like that.

Just imagine how much fun you could have!

I would buy one...not because I am losing my hair to treatment, but because some days are just plain bad hair days!

Marie

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

How about just a blue wig? Then if someone asks, I can tell them why and get the word out. Plus the blue would match my eyes. Ah Ha!

Lifeisajourney
Posts: 217
Joined: Apr 2010

Wow, I am impressed that you lost so much hair so soon. I did not know about this site till after chemo, so when they told me I would not lose my hair, I believed it.....I made it thru 7 with hair and didn't start losing it till about 3 weeks after I was taken off folfox. But the good news was that my taste buds came back the day I started losing the hair....so at least I had a consolation prize. The hair came back and I think losing my taste buds was the worst....along with neuro problems. I still find it interesting how some lose their hair and some don't, we all react so differently. When I lost my hair I thought it can't be, but found out thru this site, yes it can.....good luck with further sessions....Pat

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

If you find that you really need a wig send me your address and I will send you mine, it's brand new, never used! I lost half of mine, then it stopped. I have a lot of hair.

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

I'm thinking that I'll have to cut my hair soon and that might help a little. I'll try cutting it to about your length. Yours looks so nice. I just want to keep my ears warm. Figure as long as I can keep enough to cover my ears and wear a cap out then mybe I'll get by. If not then I might take you up on the wig offer. I'm on the Holiday card list. just in case. Thanks!

I'm just hoping that FOLFOX does the trick and I don't have to go to FOLFORI cause if FOLFOX is doing this I'm sure FOLFORI will finish it off.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

You got it! I have a short one and a long one!

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Ive often wondered if my hair would start to fall out how that would be. Being a guy guess not much, just shave it off like half the population. (even go mohawk a few days to!) But you ladies I can see where that would but a daily double slap.
Lets hope it dont come to that. Other than some nausea my side effects have been minimal.
Does it get worse the more treatments you have? Go for #3 tuesday.

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

I finished #3 last week. Honestly, I'm not sure if it's getting better .. but, it's getting easier to deal with. I know what to expect and when to push myself and when to slow down so that really helps. I do notice all sorts of weird little things and now I just mutter "Damn Chemo". I'm sure not everything is chemo's fault but, what the heck ... why not blame chemo. LOL

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

I find I always have to try and counter a not so good situation due to this cancer with a good one. It helps to look for the positive. I'm hoping this hair thing stops at 50% like the websites say. We sure lose a lot of heat through our heads. Does this mean I'm really hot headed and just didn't know it? I always knew I was full o chit before this ... but, I didn't realize just how full of it I was!

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

LMAO, I spent the days before going on Thanksgiving vacation, plunging my darn bathtub.
It was he11, pure he11, plunge, plunge, plunge, few rewards, then finally, my HAIR, and again my HAIR,and more of my HAIR!!!! I swear I lost half of it, and I found it during my plunging. Finally had to get the Drano to finish the job off.
My beautiful hair. Wow, hmmm, really how do we say good bye to half our hair? By PLUNGING IT BACK UP!!!! ROFLMAO!!! Thank the supreme beings for DRANO!!!!I'm thinking (I know, know, not always a good thing, this thinking thing I like to do upon occasion) but I'm thinking the Drano, and RotoRooter should all be tax deductible, for every cancer patient undergoing chemo.
Well, again, just my thoughts on the matter.
Winter Marie

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

I had to clean all the drains in my bathroom and then use the drano. Sheesh. That's another reason why I wore a cap on Thanksgiving while preparing dinner. I didn't want to serve handfuls of hair with the meal and have everyone coughing up fur balls!

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

OH, my, and here I thought I was the only one wearing a disposable shower cap when making dinner. I was so embarrassed last year when my daughter threw away the deviled eggs because my hair was embedded like a reporter in Iraq in the eggs.

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

I pre-empted the chemo and lost mine years ago :) ron.

Brenda3.16
Posts: 211
Joined: May 2009

My haired thinned on folfox. I got it cut short which made it look a lot better. I lost all of my hair recently on folfori. It was very upsetting. I went and bought a nice wig before it fell out, which really helped. I have actually gotten used to the wig. Many people do not even know it is a wig. I have gotten many compliments on my new "haircut". The worst part of the whole thing was when the hair was coming out in handfulls. My hairdresses shaved my head, then I actually felt a little better. Good Luck. Brenda

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Lori does your scalp hurt? I'm pretty sure that side affect is next. Just the wind blowing wold cause me lots of pain on my scalp. You know that feeling when your hair has been up in a pony tail too long and when you put it down, you go/say OWWWWWWWWWW! That is the feeling.

I had to use less hair spray if any...and not play with my hair at all.

PS, I could never shave my head! I was in the Air Force 15 years, but not that much of a GI Jane! lol

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

yes!!! I keep feeling like I hit my head on a cabinet door or something and keep rubbing it to check and see if there's a bump somewhere. It's the kind of sore that you get when something like that happens. Or like you said ... too long in a pony tail. Ha! Another thing I can blame on chemo. Damn chemo!

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Yes, I lost hair too (only thinning). The worst part was looking at the drain. It was such a shocker to see all of that hair. I went to the local American Cancer Society and they gave me wigs, hats, etc. I would recommend stopping in or giving them a call. They had so many to choose from and the staff were so nice. I ended up never wearing the wigs. I did wear the hats and I wore headbands to cover up. Hang in there and remember there is a light at the end of the tunnel. Keep the end of this chemo in sight.

Hugs,
Lizzy

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

I'm hoping it will stop at the 50% thinning mark. I did stop at ACS and they are great. Biggest problem with their wigs ... sorry ... Love you ACS ... but, .... they all looked like Harpo Marx ordered them in every color to match his hair style. Is my age showing? Yikes

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

Lori,

My oncologist said not to worry - only 5% lose their hair completely while on 5FU. Turns out I was one of the 5% - go figure. I still remember the day (and the wine!) that my daughter shaved my head for me. I couldn't stand to wear a wig (it was summer and HOT) but a dear friend hand painted silk scarves for me and I learned to tie them creatively! The silk was very soft and soothing on my scalp. My hair did come back, but not the way I expected. I was/am a redhead - and it came back very dark brown! Eventually it got back to red (OK - I help it a lot! LOL!) I also learned that I wasn't defined by my looks.

Funny story - I was shopping and a woman said "Oh, I wish I could wear scarves the way you do." I will never forget the look on her face when she put 2 & 2 together and realized what she just said. She truly meant it as a compliment, so I wasn't offended.

Yes...keep the Drano handy!

Many hugs, Vicki

AnneCan
Posts: 3692
Joined: Oct 2009

No wonder they wrote the musica! Lori, I have very fine hair too. I lost almost all of it, had my daughter cut the rest short, then it started growing back in. I told my onc + she said it will come + go. My hair was growing back nicely; I was even getting compliments on how nicely it was coming in. Then one day I noticed hair in my comb - my onc was right it was coming out again! Mostly on one side I noticed. My daughter recommends I cut it all REALLY short so there isn't a lot of contraast. I'll have to think on that; it is not ezactly long! Anyway, I have not worn a wig even though I bought one. I wore scarves or hats. More many months I wore nothing on my head. Now I am wondering if I need to start wearing something again. I did buy a beautiful wig when I went on folfiri. I may wear it next week when I go to our company dinner. Good luck; you will rock whatever look you decide on.

okthen's picture
okthen
Posts: 232
Joined: Jun 2010

Hey Lori, just thought I would share that Jack is losing his too...he was upset because I had told him no hair loss, I had not read about the 50%...anyway, he didnt expect it.
I don't notice it unless I am looking at the crown of his head. He's still my silver haired fox, so I'm trying my hardest to make sure he knows it. (o:
Hugs...don't have a wig to send ya, but you have my prayers. (o:
Chriss

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

People say they don't notice mine yet either but, I now have to curl, tease and hair spray to get it to look like it used to without any of that before. And I did get someone to admit that my scalp is showing more at my part. Good thing that crooked parts are in style. that kinda helps.

Keep telling Jack that he's your fox and I'm sure that will help him. I'm thinking if my hair ends up all going away I should paint my head a different color each week with some sort of fun or inspirational message on it. That ought to match my gloves and double socks I've been wearing. Hey, I know what ... I can be a roving comedy skit. that's it ... I'll just put a new joke each week on my head with a sharpie.

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