The Colon Club

I’m on chemo for life but have taken oral chemo like Lonsurf since stopping IROX in the summer. I did notice that with irinotecan, my hair thinned out a lot. Same as you, the nurses told me they’d never seen anyone lose it all, however. I never lost so much that it couldn’t be styled and it basically looks decent (although I did start out with unusually thick hair). Like you I think it helped to wash my hair about once per week and no more. Also, I used to blowdry my hair straight but stopped when I started chemo. It’s naturally very wavy so it works for me but I know it doesn’t for everyone. I haven’t used a hairdryer at all since last January. If you do like to dry and style, just be very gentle with the brushing. The positive was it never looked patchy, just noticeably thinner all over. My hairdresser did suggest not letting it get too long as longer hair weighs it down and more could fall out. Not sure if that’s at all true but I have kept my hair about shoulder length just in case.

I am about to do treatment #7 with Folfox and Avastin. In the last week my hair is falling out pretty badly. I was hoping it was the season change?!?!
I am a long thick hair lady so I am finding this to be really emotional and sad. I also worry how it will make my kids feel. I did go and get it chopped into a bob style and it’s thin but I can still pull it off but my fingers are crossed that this dramatic thinning slowssss down.....

Vana3 wrote:I also worry how it will make my kids feel. I did go and get it chopped into a bob style and it’s thin but I can still pull it off but my fingers are crossed that this dramatic thinning slowssss down.....

My twins (aged 7-8 through my hair thinning) sort of half paid attention for a while. They LOVED the fake ponytail and wraps and my “fancy hair” that added some thick waves - all secured from Amazon for $40 or less (Hairdo brand).

Now it’s starting to get a little thicker but as a result I look like a nutball - think Einstein - and I swear it does not bug anyone but me, even the 14 and 16 year olds in the house are chill about it.

I think as long as you have solutions that keep you happy, the others in your life will just take things in stride!

Only two rounds left and I'm losing a very small amount of hair again. I'd shaved it all off and it's probably half an inch long now? I'm trying not to sweat it. If it comes out in clumps again.....BZZZZZZZZZZZZ!

I was a bob gal from the start because I have such fine hair. So as soon as it started to thin I went to a pixie. It was a good move for me, I lost most of my hair! Looking back, it was really emotional, but it has grown back and I have pictures to remind me of the battle.

So this thread inspired me and on Tuesday I not only got my hair cut, but colored to hide my pretty minor greys. It's a bob a couple inches longer than chin length. The hairdresser totally got my issue with the new growth but desire not to cut back to that length. It looks like it will take another year+ to grow all of my hair out to its current length.

I feel so much better!

BTW, at some point last year in the latter stages of chemo I started using a shampoo and conditioner that really improved my hair: OGX Thick and Full Biotin and Collagen. Unlike a lot of "thickening" shampoos, this one does not rough up the cuticle, and the hair is soft and shiny.

So my wife starts FOLFIRI on Monday. She saw some thinning with FOLFOX but she was also severely anemic at that time. I guess reading this post it is true that hair loss is a bigger side effect with FOLFIRI than the other?

tater wrote:So my wife starts FOLFIRI on Monday. She saw some thinning with FOLFOX but she was also severely anemic at that time. I guess reading this post it is true that hair loss is a bigger side effect with FOLFIRI than the other?

It is, I believe about 50-60% of people will experience ‘some’ hair loss with irinotecan, however this could be very mild thinning. Complete baldness is fairly uncommon (<10% I think). I’ve heard if you’re going to lose hair it will be within the first 2-4 cycles. Some people also lose it and have it regrow even while on chemo; others it regrows when they stop irinotecan.

Mine has definitely thinned after 5 cycles of FOLFIRI, but not to the point of being an issue - I’ve changed my hair products and style a bit to accommodate it.

Best of luck to you guys,
Rob

I just noticed this thread. Back in May it was not an issue for me. I never had chemo for the colorectal cancer, just surgery. Then, in June of this year, I had very bad news(didn't know how bad it was at first). During an endoscopy/colonoscopy a mass was found in my esophagus and it was stage IV. So this summer was spent doing 5 chemo rounds and 28 radiations. The chemo is different for esophageal cancer. Carboplatin + Paclitaxel. And the hair started falling out. It's coming back, about an inch now, pure white. Not all came out, about half I'd say. I keep a short do and blowdry it. I timed the last blowdry and it took a minute and half to dry, so it's really thin and yucky. And it used to be wavy and be able to be styled some, now it's poker straight and sticks out. Can't do anything with it. Don't know how its going to be when it comes all back(if it does). I had a PET scan about a week ago, and metastases were found so probably more chemo in future. Waiting to see oncologist.

I'm going to look for that shampoo and conditioner. Having a tough time emotionally this time around with the hair loss. I know it will grow back and I only have one treatment left, but this still sucks.

AmyG wrote:I'm going to look for that shampoo and conditioner. Having a tough time emotionally this time around with the hair loss. I know it will grow back and I only have one treatment left, but this still sucks.

The right products can make a big difference! And if something small can make this whole thing a bit more bearable, then way not.

What worked for Jesper when his hair thinned out like crazy in the summer was saltwater spray and blowdrying his hair. I know he's a guy so it's not the same, but it definitely gave his hair more volume and texture and hid his scalp. He'd just spray the saltwater in his hair after washing it and then blow-dry it. It made a big difference.

AlexandraZ wrote:What worked for Jesper when his hair thinned out like crazy in the summer was saltwater spray and blowdrying his hair. I know he's a guy so it's not the same, but it definitely gave his hair more volume and texture and hid his scalp. He'd just spray the saltwater in his hair after washing it and then blow-dry it. It made a big difference.

This works really well for me too! I use a sea salt spray, along with a “plumping” shampoo & conditioner (Kevin Murphy). If you use these, then blow dry really well, then use a matte styling product (like a clay, powder or matte wax), it can make a huge difference. Anything that causes hair to stay damp or ‘clump’ (like mousse or gel) is going to make it look thinner. I know it’s not an option for everyone but I also cut it very short on the sides so any thinness there isn’t obvious.

As an update, I completed my fifth treatment of Folfiri this week and have noticed that the hair thinning has progressively been less and less. Don't get me wrong, it's still falling out but not to the extent as before. I did cut my hair to just above shoulder length and as Amarie noted, the longer hair may have been weighing everything down thus accelerating hair falling out. Also started using the OGX shampoo and conditioner as suggested by boxhill. Perhaps its the combination of all of those things.

I'm glad it's better! I'm still rocking the bald head. My husband and I shaved our heads the same day and his has grown back so much faster. It's okay though, I haven't lost my eyebrows or eyelashes again, at least not yet!