Hi everyone......Hope you all are having a nice holiday! I have a question about 5FU and hair loss. I just recieved my 9th treatment on Friday. My doctor started me off at 75% of the dose for my weight, because of my other health issues. We increased it to 85% three weeks ago. Up until then, I did not lose any hair. Well, it's really coming out now! I know it sounds trivial, but I am so upset about this! They told me that 5FU usually doesn't cause total hair loss, just thinning. Does it keep coming out as long as you're on treatment, or will it slow down? I have at least 4 more months of this, and at the rate it's going, I don't think I'll have any in a few months. My hair is usually pretty thick, so if it slows down, it won't be too bad.....but if it doesn't, it's not gonna be pretty! It's just so upsetting.....

Windy

5FU does not normally do this but if I recall correctly it occasionally does.

I lost no hair due to chemo. I have typical male pattern hair loss but that started in my 20's and did not appear to accelerate during chemo.
I am also hairy on chest , arms and legs and noticed no loss there.

The only hair loss I had was on my butt during radiation treatments and most of that did not come back afterward(no loss:jester: )

Breast cancer chemo does often cause hair loss but all the women I know who did lose their hair that way , had it grow back afterwards.

Oh, and I just got back home after a week's holiday time at the cottage. Weather was mostly great and I now have increased my chances of skin cancer I suppose due to the sun I took in.:wave:

I was on Oxaliplatin, Leucovorin and 5FU, I have only finished 2 cycles of those two, due to an allergic reaction, he decided to just continue with the 5FU, well I have started noticing my hair failing out too. It is definitely thinner than it used to be, I can put my hand through my head and pull at least 5-6 hairs out each time, that's where the status of that is now.

Everyone is different to this stuff, traditionally it's not supposed to make you lose your hair though, or that's what they say.

Hang in there!

Hi Christy;
That's exactly what's happening to me, only it's more than five or six hairs....I can run my hand through mine, and just watch it fly away in the breeze. And when I wash it, it's alarming! I normally have thick, strong hair. Even the texture has changed, My oncologist told me yesterday that it will slow down. I hope so! I have longer hair, and I hate to do it, but I may cut it shorter if this keeps up.....My treatments will go on until November. How are you doing on the 5FU alone? Feeling better? Hope so ;)

W.

Windy:
I know it's alarming to see hair loss...holding hair in your hand after running your hand through it. I experienced the same thing. I could sit there and pull out what I thought was a lot for a while. I would also find it on my pillow. It happens, and is normal. Remember though that it is probably MUCH more noticeable to YOU than anyone else. Most people don't even notice, especially if like you say you have thick hair to begin with as I did/do.

Also, keep in mind, it's rare for you to completely lose your hair with the cocktails they use for colorectal cancer. It's funny though, I remember people asking me if I lost my hair. And in some way they equated that with how bad the experience of receiving chemo. Looking back now, I can almost laugh and recognize how it really is funny how ignorant some people can be. Just like they would automatically assume that since I was 31 that the doctors caught the cancer early....WRONG... advanced stage, but they don't realize it. And I also have to add how most people just assume that since you are finished with chemo, all has to be well--again, WRONG! They just don't think about how Survivors can have persistent chronic side effects that effect every day living. I came to the conclusion that people like to try to make everything okay for fear that because you went through it, it's possible that they could. And they want to try to distance themselves as much as possible. My advice from my experience... should this happen to you-- your inclination is to become bitter. Try laughing, it does wonders for the soul. ;)

Good luck, and know that you should NOT go bald. Sebastian makes a great product to moisturize your hair that my wife insisted I use called "Potion number 9." It's just a heavy duty conditioner that also makes your hair look fuller. Just food for thought. Sorry about the rambling!!!! :)

Regards,
CancerDad :angel:

I had thin hair before chemo, and I'm losing more and more every day. I've ordered a wig. My oncologist wrote a prescription for it and my insurance will pay some. (I have Aetna). If it gets real bad, call your insurance co. and see if they will help out.
B.A.Mc.

I washed my hair yesterday, and got another alarming handfull....Made a pony tail and it's about half the thickness it used to be. It still looks ok, nobody notices that it's thinner, so if it stays this way, I can live with it. But, with 4 more months of chemo ahead, I'm not sure. I think I might go ahead and order a wig. There's a store in my neighborhood that has some nice wigs, very natural looking, with a "scalp" even. They're kind of expensive, and my insurance doesn't cover wigs, but I'm going to do it anyway. Then at least I'll have it ready to go if my own hair thins out too much. And even if it doesn't, on the days when I don't have time to do my hair, I can just put my "spare hair" on, and I'm good to go! :cool:
By the way, my oncologist started me off on a lower dose of 5FU for my first 6 treatments. Then I bumped up to 85% of the total dose for the next 3 treatments, and now I am at the full 100%. I have been having a pretty esay time of it, as far a side effects so far, but this weekend, after the first full dose, I was having waves of nausea, nothing I couldn't handle, and had a BM last night that "burned".....does this happen with 5FU? My doc says if I get bad side effects, he'll drop my dose.....but so far, nothing horrible has happened...

Best to All......
W.

:) Hi Windy,

I lost a lot of hair, but only my hairdresser noticed! (I have a good head of hair on me, too!) I noticed that it did slow down as time went on. I hope it does for you, too.

My bum burned horribly on 5FU/radiation. When I was on 5FU alone I did not use my bum so I can't speak to that. I can tell you that I had LOTS of diarrhea that burns the skin around my stoma, so I would assume it would burn the bum as well. If you are having burning that goes up to your throat I would ask for Nexium or some kind of med like that. Also try some aquaphor and sitz baths for the bum pain.

Good luck to you!
Cats

PS - CD I could TOTALLY relate to your post... thanks for putting that feeling into words...be sure to add that to your book!:D

Yeah, CD hits the nail dead on there. Hair loss, although disturbing(especially more so for the women) does not compare to such things as pain and nausea yet I too was asked by those who knew I was on chemo, if my hair was falling out. In my case it wasn't but why not ask if I was feeling ill or if there was any pain?

I too had diarrhea and if the colostomy wafer had any gaps bewteen the barrier and the stoma then the skin got burned. The radiation also gave me a very painful butt burn.

You mentioned burn. See if your dr. will prescribe lidocaine cream or ointment. Also nupercainal is good. It's non prescription, but I could not find it in the drug store. Had to order it online.
I take probiotics to try to ward off the burn. I've had a combination of side effects. First treatment, 5 days of diarrhea. Only one day was bad enough to take immodium. Second, normal. Third treatment constipation. Tomorrow I go for number 4. I'm on folfox. Hope this helps.
B.A.Mc.

Well I just read your post, I finished my chemo about 3 months ago now. I had the 5-FU and oxaliplatin, and I lost a lot of hair. Of course the Oxaliplatin has the side effect of hair loss too. My oncologist never mentioned it as a side effect, and told me the same thing, it may thin, and that I would notice before others. Well I too had very thick naturally curly hair, and I've noticed that it has become a good bit thinner, and the texture changed some. Good news is it's all growing back nicely. AND I didn't go the wig route, I don't know how long your hair is, but I got a few clip on pony tails from a wig store, they have a butterfly clip, i just clipped them to a bun in my hair and no one could even tell it wasn't my hair. Good luck with this. I know how you feel, when your going through soooo much with chemo and this seems like something petty, but to us women it's a big deal