Folfox and hair loss -does it usually happen or not?

[Karen in Ohio]

Just wondering what people on Folfox have experienced in regard to this issue - if you have lost your hair, is there a good website for scarves/hats that you like to use? Do you get a wig or prefer to go the scarf/hat route?
While I know this is not a top priority in the big scheme of things, I am wondering about it
Thanks,
Karen

[Surroundedbylove]

Most people don't lose their hair on FOLFOX (or XELOX for that matter). Some may have thinning. When I went through chemo there were a number of people being treated for colorectal cancer and only one woman had thinning hair but her's was very, very fine and thin to begin with and she said the doc told her because of that she may have some thinning. She never lost it though. She cut it shorter and that apparently helped.

If you have normal hair I suspect you won't notice much. I lost a bit of hair after my surgery but that has always been a side effect for me from anesthesia - it had nothing to do with the chemo.

[janklo]

My daughter has very thick hair. She lost probably about 1/3 of it. You couldn't really tell at the time, but now the new hair is growing in and is a couple inches long. So the bulk of her hair is down to the middle of her back and she has these little pieces all over that are shorter and stick out. I told her she will probably have to wait until the new ones grow to shoulder length and then cut it all to match. But, it's better than losing all your hair. And, yes in the big scheme of things, losing your hair but having successful treatment is not a bad trade off!

[Terry]

I didn't lose any hair at all with oxi, xeloda or avastin. I did lose ALOT (enough you could see my scalp all over) with ironitecan (folflori). Most people don't lose their hair with folfox so I wouldn't buy anything until you find out. When I ended up shaving my head from ironitecan, I bought all kinds of scarves from http://www.headcovers.com (they came within a couple of days)I like the long ones. Don't buy the bangs, they look plastic and they don't curl well.

Don't ever feel bad for asking a question and thinking it's unimportant. One thing I found out from having to shave my head was, hair is pretty important to the self esteem. It's hard enough to go through chemo without feeling selfconscious on top of it. But honestly, you most likely won't lose your hair with the oxi (folfox).

Good luck and God Bless!
Terry

[Ashlee H.]

I have thin straight hair and did lose about 1/3 of my hair on FOLFOX. I first noticed the hair was breaking off - my hair got so dry. I cut my hair short (chin length) and a lot of layers. Everytime I shampoo, I use a good hair restorer conditioner. No one could tell I had lost hair. The short layers helped if I needed to do a "comb over" in an area. The hair just started to grow back, and I was put on FOLFIRI. With FOLFIRI I've probably lost 2/3's of my hair. I'm off it now in order to prepare for surgery, so I'm hoping I get a little regrowth before having to go back on FOLFIRI for 3 months. I've looked into everything. Wigs are hot and itchy. I don't really have a face for hats, and my head is huge, so it is difficult to find hats that fit properly. I have purchased some items from Headcovers (Terry's suggestion). Through all my testing, for me my best solution has been wonderful scarves. Because of my big head, the ones I could find in the stores just weren't big enough to look right. I found "Anokhi" scarves through a store at my cancer center. I found their website - http://www.anokhiusa.com. Their scarves are 30" x 30" and are absolutely beautiful and so soft. They were cheaper on the website than the store. I like them because as I started losing the hair on top, I'd fold the scarf into a headband, and could adjust the width as needed. Some days I just tie it as a scarf like I did in the 60's - the Heidi look. I still continue to use the super conditioner. I also agree with Terry about the bangs - they aren't worth the money and didn't work well. Farrah Fawcett's trick when she lost her hair was to keep her bangs, so it did look good under hats and scarves. I've kept my bangs, although now they start at the middle of my head. But, you put on a wide headband or a scarf, and no one sees the scalp. Personally, I really don't mind having less hair as long as the chemo is doing its' job. What I hate is the obvious sign that you are on chemo and have cancer. Now people just mention my beautiful scarf and the subject of cancer never comes up.

[jens22]

Karen,

i lost about 3/4 of my hair from the OXI...over 2 months I went crazy. It just got everywhere. My oxi was stopped (It was the 9th and oth treatment) and the hair lose stopped too! I didn't think it would effect me but it did. Now it's coming in a little bushy but I manage different headbands every day. I wore a baseball hat this summer to protect fromthe sun.

[Gaelen]

The short answer is that no, it doesn't "usually" happen. Everyone typically reports some amount of hair loss that seems more than they'd normally lose - but it usually isn't enough that other people will notice.

The thing with the types of chemos where hairloss is a serious, standard side effect is that long hair will fall out in clumps if any pressure is placed on it. Brush it, or lay on a pillow, and big clumbs will be left behind. Where the clumps were on your head will be a bald spot. The patients who get paclitaxel, taxol, cisplatin, the breast cancer, lung cancer and some of the lymphoma chemos - those people lose all of their hair, almost all at once. And I do mean all of it - eyebrows, facial hair, pubic hair, too.

Now, the summer of folfox, my normally thick hair did "shed" more than usual, and I didn't notice new growth although it usually grows very fast. No new growth meant that I also didn't have to worry much about shaving my legs all summer long - hey, a perk! But nobody I work with could notice any hair loss - and since that's always the most expected and feared side effect when people hear you have cancer, there was always constant amazement that "but your hair looks great!"

Yes, you might fall into the very small minority (I think it's under 10%) that actually loses so much hair on folfox that you notice baldness in patches. But it's very rare to actually lose all of your hair in a 12-round course of Folfox.

And like everyone else has noted, on Irinotecan, I *did* lose enough hair that it felt noticeable (although my friends all said it wasn't.) My stylist gave me a short cut, and I worked to keep it healthy and clean, and boosted the volume with products. But seriously - nobody who had true baldness from their chemo even noticed the comparatively little hair loss I had.

[Canadianmom]

I am on my second round of Folfox. First round I noticed a some loose hair but this round I am losing alot if hair. I have quite a bit to start with. I guess that hair loss is minor in the grande scheme of things though. Trying to take it all in stride.

[waw4]

I'm on Round 8 of FOLFOX4 and my hair has thinned by say 30% or so where it definitely feels thinner to the touch and I can more easily see scalp at any parts - but I'm not 'balding'. My wife bought me a silk pillow case which I think helps a bit - less friction to wear off hair.

[nicola smith]

I chopped my hair way short prior to surgery and chemo and have kept it that way. My normally thick wavy hair became straight and fine. I had about a 30% hair loss, not noticeable to most people. I am three months out from chemo and there is no sign (yet) of my old hair returning but I expect it will.

[jmarie]

I started with very thick hair and it thinned out alot, mostly probably due to weight loss and lack of nutrition. Then I switched to Folfiri and last a lot mainly along the hairline so it was noticeable. I bought a few hairpiece but rarely used them. Since going back to Folfox my hair has filled in quite a bit.

[catta]

My dads hair did not change at all with folfox.. didnt lose a strand, it did thin out with folfiri, but new growth was evident within 8 weeks..
you can buy hair pieces that make your hair look thicker.. NOT wig looking.. jessica simpson hair wigs.. easily found on ebay and not expensive..
IE.. noone noticed my dads hair thinning, so it may only be evudent to yourself..
ALSO a Jess said.. eat well. lots of zinc and vitamin b based foods.. it does help alot..

[Brendaindy]

I was on folfox and lost a lot of hair. Not enough for a wig but noticeable. I lost alot of my bangs (used to wear my hair with bangs) now I dont. I have been out of treatment since 5/09. Sucks, I still have thin hair and I can feel the texture diffrence even now. It's not showing scalp like it used to but alot thinner.

[Elisa1]

I'm on my 7th cycle of Folfox and have lost a lot of my hair, and the hair that is left is much finer. I bought a scalp derma shading product from Amazon that matches my hair color.(DermMatch is the product - they have a number of colors. It was $29 but will last me through the whole 6 months) I apply it to my scalp after washing my hair and it really covers the "comb over" parts of my scalp that was showing and I love it. It's easy to apply (especially if you have someone that can help with the back of your head) It stays on til the next wash, then I reapply.

[Gloria]

I just finished round 10 of Folfox and have lost about 30% of my hair. You can see my scalp more but some of that I think is due to my roots being white, I normally color but stopped after a couple of months of chemo. I have started using a hair band to pull my hair back with,then you don't notice it as much. I do have new hair growth even while getting the chemo.