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Follically challenged

Love2Cats's picture
Love2Cats
Posts: 127
Joined: Dec 2010

Well, I knew it was coming.

I started Folfox with Avastin every 2 weeks on January 31st of this year. I knew that my hair would begin to thin, and now I am shedding worse than my cats. I think I saw one of them with a lint brush trying to get my hair off their fur.

Anyhow, I was just wondering, how much hair should I expect to lose? I'm guessing it it probably not the same for everyone, but for people who have had the same type of chemo, how much hair did you lose? 10%, 20%, 30% or ?. Could it fall out completely?

Will I have bald spots, or will it come out evenly all over?

Thanks for the help,

Sandy

abrub's picture
abrub
Posts: 2146
Joined: Mar 2010

but the hair on my head stayed - just changed texture. Loss of hair is not a given with Folfox plus Avastin.

It was interesting, however, that while from my eyebrows downmy hair thinned greatly, but the hair on my head just went dead straight, with virtually no thinning.

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

I lost handfuls of hair during FOLFOX. I wasn't on Avastin with it. But, it slowed down and I had a lot thinner hair but, it came out evenly with no bald spots. Probably about 40% which is a lot for me because I have baby fine hair ... not thin normally but so fine and silky that by the time I stopped FOLFOX ... with 6 full treatments ... my ears sure got cold cause there wasn't enough hair to cover them to keep them warm. Most people from what I understand don't lose it but, I guess some of us do. From what I understand it shouldn't be more than 50% at most. I also lost eyelashes ... grrrrrr but, thank gooodness for false ones ... though I haven't worn them yet ... just use my eyeliner a little differently. Look on the bright side ... I haven't had to shave my armpits or legs for months!!! I been off FOLFOX since Jan 31 and I still haven't had to shave. I haven't noticed my hair coming back yet but, it's not coming out any longer.

One thing I did was to try and only wash my hair once a week and if I didn't need to mess with it or wear it down, I wore it up and used hairspray (which I hadn't used since the 80's) so that I was less likely to brush or mess with it. Washing it was the worse because I would have to clean out the shower or bathrub drain during because there was enough to clog things up. I also learned to tease and use hair spray to try and get it to look fuller. Yikes ... had to become a little creative but, I pulled it off because most people didn't seem to notice unless they ran their hands through my hair. Which of course I didn't let anyone do without permission ... didn't want to shed on anyone!

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hehehe... you are right... I think it's different for everyone. I had my first Irinotecan only treatment on Feb 7. The two weeks after that infusion I was so sick, I was pretty much bedridden the whole time (obviously I am a tad sensitive to the chemo). I was too sick to notice hair, but I did notice there was a lot of hairs on my pillow that normally wouldn't be there. By the third week, it was ridiculous! I have a miniature schnauzer who is a non-shedder... yet my pillows and sheets would have a thick coating of hair ... it was horrible!

The final crunch came when I was getting ready to go to my onc appt on March 1st. I hopped into the shower and noticed that yes, my hair was going bald on the sides... but still, had the majority of it. While in the shower, I took a bit of shampoo, rubbed it in my hands and then applied to hair... as usual. OMG! My hair wrapped around my hands! I didn't feel it come out... there was no tugging or pain... it just came out and I had two gorilla hands! FREAK OUT!! I couldn't even scrape the hair off my hands there was so much! Obviously, I wasn't about to condition what was left of my hair. I got out of the shower and had to scrape and gather the hair off my hands... and wasn't sure how to towel dry my hair without it all coming out. I let it dry naturally... and then stuck one of my wigs on over top.

Went to my onc appt... told her I'm hairless other than what is under my wig. She was surprised and said that happened very quickly ("no sh*t, Sherlock!) and when I finished that appt. I went to the mall across the street from the Cancer Agency, walked into the nearest salon and had them shave the rest off. I now have a totally bald head... yet, my eyebrows and eyelashes are still intact. They don't appear to be coming out. Hahaha... kind of makes me laugh. I am soooo overdue to go for an eyebrow waxing... but do I really want to get rid of more hair???

So, hard to answer the question in percentages. 100% of head hair... but everything else seems to be intact :D

Cheryl

Buckwirth's picture
Buckwirth
Posts: 1271
Joined: Jun 2010

I had no hair loss. My understanding is that it is not a common side effect of Folfox.

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

Avastin, I couldn't tell ya, haven't done it..buzz

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I read you had started FOLFIRI but see you said FOLFOX ;) It's the IRI (Irinotecan) in the FOLFIRI that I was talking about... hair loss is very common with Irinotecan, although again, your mileage will vary as to how much.

4 years ago I was on FOLFOX. I had super thick hair before starting the FOLFOX and I'd say I probably lost about half of it... although not in patches. It just kept thinning and thinning and thinning until I ended up with half the hair I had before, but it wasn't noticeable (except those who knew how thick it had been). I now actually looked like I had a normal head of hair. I did get it cut short because then it was less noticeable how much thinner it was :)

Cheryl

Love2Cats's picture
Love2Cats
Posts: 127
Joined: Dec 2010

I have already cut my hair short for the first time ever in my life. I never thought short hair would look good on me, so I always kept it long. I wish I had cut it short long ago, because I am loving the short "do".

I guess if it thins out too much, I will try and find a can of that spray on hair that I used to laugh about in the late night infomercials. Perhaps I'll get an animal print "Snuggie" too, to complete my new look lol.

taraHK
Posts: 1961
Joined: Aug 2003

I had hair thnning but didnt loose all my hair. Never considered a wig or shaving it off. My friends/family claimed "no-one would know" -- and I guess that's right altho looking at photos now, it was thin....

On the positive side, didn't have to shave my legs or under my arms!

"individual mileage may vary" -- wishing you the best outcome possible

Tara

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

I lost some of my hair, not enough for anyone else to notice except myself (one of the reasons people have a hard time believing I have chemo) however, due to family genes I have hair on my chinny chin chin, and I thought it would be great to lose that for awhile, but NOPE, the steroids I got with the chemo, helped them grow even more. I didn't lose any body hair except for the hair on my head that I mentioned. One nice thing about the steroids though, for a couple of weeks, my nails would get grow and look so nice long. For every negative, there at least seemed a positive would show up.
Winter Marie

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Winter... I was going to post a new topic and ask if anyone else had noticed that while on chemo their nails grew faster and longer? Also, my eyelashes! I have always had short stubby eyelashes that I really had to cake on the mascara to show I even had lashes. But now, they are so long... add a bit of mascara and it looks like I have false eyelashes on.

Which is really hilarious because my eyebrows are two huge catarpillars. I have GOT to go and have them waxed this week before they turn into a uni-brow!! Yet... I lost all the hair on my head... so I'm an alien being from ET!

But hey... a cute alien head with a soon-to-be uni-brow and gorgeous starlet eyelashes!! :D

Cheryl
Alien Starlet

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

Yes, loved the nails, they would last about two weeks, break off for a week, back to chemo, lovely nails again...
Glad you're our cute Alien Starlet!!!
Winter Marie

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hehe Winter... see? I got a new hat for my new Alien Starlet image :) It even comes with sequins! A starlet must have her sequins!!

Cheryl
Alien Starlet, Inc.

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

Love the sequins!!!

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