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

[Kathryn in MN]

Chances are you won't lose your hair on FOLFOX, but might have a little thinning. There is a very tiny chance you'll be like me and lose a lot.

I had very, very thick long hair all my life. I lost about 9/10 of it on FOLFOX. But because of how thick it was to start, anyone that didn't know me wouldn't have noticed. They would just think I had rather thin hair. It did get to the point of being quite receded at the temples, and very thin on the front top and sides, so I kept the front parts pulled back into a ponytail, or kept all of it back in a ponytail or bun. This gave the illusion of still having my thicker long hair. But I only had a tiny wimpy ponytail when you looked in the back.

I stopped chemo the end of April, and a few months later it started filling in more. The new hair was a lot softer than my hair has been for years.

But I only had a few months off - my cancer was active again so I'm back on chemo since September. I'm on FOLFIRI w/Avastin, and my hair started falling out pretty more rapidly than before. It is common to thin a lot, or lose it on Irinotecan, so this was not unexpected, as it was with FOLFIRI. I cut it short, and really liked it. But I didn't get to keep it for long. I did the old man comb-over for a bit, but my hair got so thin and had so many bald spots that it looked awful. So we shaved. Both of my sons and my husband went first, and then it was my turn.

I know everyone's cancer experience is different. But for me losing my hair was not traumatic. And this is pretty funny now because my first concer when the oncologist came to my hospital room after my resection and told me I needed chemo was to ask about losing my hair! Everyone has always known me by my hair. Seriously it has been long and thick my entire life - I've never even had short hair. I thought it was a big part of who I was. I was very worried about losing it. But after going through everything else (colon resection, port insertion, infection, port removal, another port insertion, allergic reactions to chemo, thrush, nausea, diarrhea, pulmonary embolism, and the list goes on), losing my hair was nothing. Heck - it was only hair. I can't believe now that I was so concerned about it.

I've always looked awful in glasses, but good in hats. So I thought hats would be the answer. But I have a very small head, and now without all that thick hair, it is hard to find a hat that fits and isn't too large. I got a wig from a friend, but it isn't comfortable, and I don't think it looks natural. So, I wear hats when my head is cold, and nothing when I'm warm enough. Some people stare, but I don't care. People always stare at my husband and I anyway - two very tall people (6'8" and 5'11"). The same if I'm with my boys who are 6'5" and 6'8". So one way or another they are going to stare. That is their problem, not mine. Maybe I'm kidding myself, but I don't think I look that bad with no hair anyway. I've got lots bigger problems to worry about.

There are perks too - on FOLFOX I shaved my legs less than once per month. Normally I shave them every two days. The same goes for my underarms. I didn't lose my eyelashes or eyebrows, although they thinned. This time I still have them, but they have thinned. I didn't shave my underarms for almost two months, and just finally did again this morning because they were getting a little fuzzy. I lost my pubic hair, but a little grew back - also fuzzy. I've never had a Brazillian wax, but now I've experienced the results without having to spend the money or go through the waxing. Instead of having spikey hairs under my arms or elsewhere when the hair grows back, when it does grow a little, it is soft and fuzzy. The tops of my legs lost the hair, but for some reason the bottoms of my legs didn't lose it all. I did just shave them, after almost two months. They weren't really bad, but now I bet I won't have to shave them for another month or two. I don't have to worry about washing my hair hours before I leave the house so it will dry. I jump in and take a very fast shower since (other than today) I don't have to shave or shampoo! I towel dry and I'm ready to go. My hair doesn't blow in my face on windy days. I don't have to brush it. I'm saving $$ not buying shampoo or conditioner, or hair accessories. This really isn't bad - other than my ears and neck get cold a lot.

You can't really control whether you lose yours or not. Try not to worry about it. If it starts falling out, deal with it then. Compared to the other side effects of chemo, hair loss is the easy one.

[Karen in Ohio]

Thanks for the info- Kathryn, you look great in your pic! Since my hair is kind of thin and fine now I guess it won't be any big loss if it happens and maybe I will get a whole new look like you did

[RayGirl]

I had very thick, wavy, long hair. I cut it short before I started everything, because I didn't want to clog up our plumbing. I never notice any loss. According to my hairdresser my hair is thicker after treatment, though it did lose it's wave.

ACS has a program "Look Good... Feel Better" they go over make-up, skin care and different head covering options, including one with a t-shirt. It is a free program and includes a bag full of products, good stuff too from Aveda, Bobby Brown, Chanel, Clinique, etc... You can look for a flyer in your doc's office or hospital website.

Good Luck with treatment.

[MarkS.]

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.

I'm at the same point as you Gloria. I just finished round 10 (2 more to go....woot!) and probably have lost about a 1/3 of my hair. My haircut is typically short anyway so I didn't even really notice it until about Round 6 or so. I mentioned it to some of my friends who know my condition and they said they couldn't even tell; that was a good sign. I figured if I ever got to a point where someone said something then I would just shave it all off. It wouldn't have been a big deal for me since I shaved my head 2 summers ago just to try something different and it was less maintenance.

[Bev G]

I lost a lot of my hair from just 3 rounds of FOLFIRI but lost a lot more of it following my liver resection (I think some was from the anesthesia as someone else mentioned) but most was from malnutrition, as my serum protein levels were so low during a lot of that 7 months of recovery. It was SO weird when my hair came back, because it seemed to happen almost overnight (or maybe that's my chemo brain thinking that). It seems to me my usually very slow-growing hair just all came back in September. I know I had lost at least 3/4 of it, and all of a sudden it was just back. Very different than before though. Mostly gray, and very, very straight, where it had been curly/wavy my whole life. I'm on just 5FU now and I don't notice any of it coming out, although I think the texture is a little different. Chemo is SO weird.

[pollo65]

I lost about 1/2 of my very fine hair, though I suspect I noticed it more than others did. Second round it is getting thinner faster and has a male-patterned balding. Wondering id a Trump type comb over could work for a woman
pollo65

[CacyB]

I am currently doing the Folfox regimen as my chemo. I am having some thinning to my hair, but can't really say it's from the chemo. I started noticing my hair thinning before I was diagnosed with Colon Cancer. I asked my doctors about it between having both of my surgeies. They said the hair thinning could be caused by my immune system being low, because of the cancer and the surgeies. And I know my immune system is a little low going through the chemo. So for me, I'm just blaiming my immune system rather than the chemo.

[elshipha]

Has anyone used a topical solution for hair loss in women that they have found results with? I am interested in using a topical cream for hair loss in women, however I would like some feedback on some good choices. Thank you!

[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.

Update, my hair came back to normal (thick, wavy) after about 8 months. My hairdresser says it is healthy and strong. I've been keeping it short and uncoloured (it's mostly dark with some salt and pepper).

My oncologist said colouring was a no-no during chemo. I expect that would apply to any topical hair growth treatment as well.

[fritts44]

My oncologist said colouring was a no-no during chemo. I expect that would apply to any topical hair growth treatment as well.

I've never heard that before! I've had my hair colored during chemo. Do you know why you shouldn't do this?

Lee F

[nicola smith]

In addition to my oncologist saying 'no', I find this article fairly convincing:
[url]
http://blog.cincovidas.com/perming-or-c ... emotherapy[/url]

[hawkowl]

Hair shedding like crazy after third cycle. 53 yo man with thin and cheesy hair to begin with, so planning to shave my head this weekend.

[iitg.ritesh]

thinning of hair does happened for me and yes hair loss was there but not much.

[Cathie]

I lost about 3/4th of my thick head of hair. I DID NOT cut my hair, I let it grow long. I bought a really cute straw hat at Target and made hat bands in red, navy blue and black out of ribbon. You can color coordinate your color according to you mood or outfit. My hair was probably shoulder length and it made me feel like I looked like I was NOT sick. I would forget to put on my hat and go to the store and it did not bother me to have such thin hair......I figured if people didn't like it they didn't have to look at me.

A few years ago I saw a very pretty woman, you know the kind, she was very confident, she didn't have a hair on her head, no eyebrows or eye lashes and I couldn't help myself, I told her she was just beautiful.....the kind of beauty that comes from within....

When my hair stared to grow back it came in curly....ohhhhhhh did I love that...yes I did. After the second round of chemo when it grew back it lost most of the curl but now has body......ohhhh I love it. It is silver grey and people tell me all the time it's just beautiful.

As for 12 years later, I still wear hats, I have a collection of 8 or 9 now. I use them for sun protection for my face and of course...bad hair days.

Cathie

[Delinda2]

I just finished 11 rounds of FOLFOX on 12/31/14. My onc dropped the twelfth round because it was so hard on me. My hair started thinning badly by about round 4. It came out so much when shampooing that I had to buy a tiny strainer for the drain & clear it 3 or 4 times per shower. Brushing caused a lot of loss too. I'd say about 1/2 of it came out, but no clumps. At first this was hard for me because my hair has always been my one vanity. I soon stopped caring about hair loss. If chemo saves your life, so what? It's temporary (I hope!!) and there are far worse side effects to worry about. I notice many who experience this mention they have fine hair. Mine's fine, but I had lots of it. It was very healthy & shiny too, but straight as a stick. I'm going to get it cut tomorrow, hoping it won't be as obvious. Now I just have to wait for it to grow in. Would be nice if it came back with a bit of curl to it. Sure it's a drag, but in the overall scheme of things, it's minor. My beloved hubby tells me often that I'm beautiful which helps. (He always has, bless his heart!) I say don't sweat the small stuff, but everyone has their own take on this so I don't judge. Wishing rapid regrowth for all! XXOXO, Delinda