Question about hairloss

IzzieCat
IzzieCat Member Posts: 56
edited March 2014 in Colorectal Cancer #1
Hi everyone! I tried to post this yesterday, but I don't think it went through.....I hope you all had a wonderful holiday weekend ;-) I know this is going to sound really trivial, but, over the past few weeks, my hair has really been thinning! I am on my 9th week of chemo, 5FU/Leucovorin. My doctor told me that this med usually doesn't cause complete hairloss, but it does cause it to thin out. I've got at least 4 more months to go with this, and at the rate it's going, I don't think I'll have any hair left. This is very upsetting to me ;-( Does the hair keep thinning as long as the chemo is going on, or does it slow down? Like I said, this probably sounds totally stupid, but it's really got me down right now.

Shedding in Michigan....
Mary.

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Dear Mary,

    I don't know the answer for your question. I am sure you will get it from other people here.

    But what I want to say is that your feelings are not stupid or trivial. There is nothing really 'stupid' or 'trivial' in this fight. Your feelings have right to exist. And this particular one is very important because we women generally worry about how we look.

    I hope you feel well.

    Best wishes, Eleonora
  • JustAnne
    JustAnne Member Posts: 13
    #3
    My husband did lose a lot of hair when he was on the 5FU/Camptosar/Avastin. He also was really bothered by the hair loss - so don't feel stupid, I think it would be even worse for a woman! His hair never fell out completely, but it was pretty wispy. He never lost any other hair though - I have heard of people that lost eyebrows, etc!

    He is now on FOLFOX and his hair is back. The other side effects have been worse, but he is glad to have his hair!
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #4
    Hi Mary -

    All I can do is tell you my experience. I am Stage IV (liver met) and had 6 cycles of Xeloda (essentially oral 5FU)/ oxaliplatin / Avastin. For the first 4 cycles I experienced no hair loss. The last two I noticed hair tangled in my hands when I showered and washed my hair. No one but me (even my hairdresser) could tell, but I have very thick hair and truly the symptoms these last two cycles were just in the worrisome category but did not actually represent a real problem (not even a cosmetic problem).

    I am not sure what your "shedding" experience will continue to be. I can't remember but I am guessing you are not Stage IV (Stage IV patients typically have higher doses but fewer treatments.)

    Concern about hair loss is not stupid, but since most 5FU patients do not really lose their hair, I hope you will ultimately end up in that category.

    Take care,
    Betsy
  • spongebob
    spongebob Member Posts: 2,565 Member
    #5
    Ahoy, Mary -

    My hair thinned and kept thinning (but also growing) while I was on chemo. Chemo treats everyone differently and while one person may lose a lot of hair, anopther may not lose any. Most - emphasis - patients on a CRC chemo regime don't lose their hair - it thins, but doesn't all fall out.

    As my doctor told me, "You will lose some of your hair, but not all of it." ... so I asked him if we could just target the hair on my back to be lost. He didn't get the joke.

    Anyway, here's hoping you have a good wooly coat of new hair grown in before that c-c-c-cold Michigan winter sets in (I grew up in Cleveland).

    welcome to the Semi-Colons!

    - SpongeBob
  • IzzieCat
    IzzieCat Member Posts: 56
    #6
    Betsydoglover said:

    Hi Mary -

    All I can do is tell you my experience. I am Stage IV (liver met) and had 6 cycles of Xeloda (essentially oral 5FU)/ oxaliplatin / Avastin. For the first 4 cycles I experienced no hair loss. The last two I noticed hair tangled in my hands when I showered and washed my hair. No one but me (even my hairdresser) could tell, but I have very thick hair and truly the symptoms these last two cycles were just in the worrisome category but did not actually represent a real problem (not even a cosmetic problem).

    I am not sure what your "shedding" experience will continue to be. I can't remember but I am guessing you are not Stage IV (Stage IV patients typically have higher doses but fewer treatments.)

    Concern about hair loss is not stupid, but since most 5FU patients do not really lose their hair, I hope you will ultimately end up in that category.

    Take care,
    Betsy

    Thanks for the replies....I am stage 3, 6 weeks on chemo, 2 weeks off, 4 cycles, for a total of 24 treatments. I'll be getting my 10th treatment on Friday. I really just got used to my scar, and now this. I'm just feeling awful about myself right now ;-(

    Mary
  • terril
    terril Member Posts: 296
    #7
    Hi Mary!!!
    Hair loss is not something stupid. It comes as a shock. Unlike some other chemo treatmentws where hair loss is complete after 14 days, these chemos they use for colon cancer cause thinning or major hair loss over time. I have very thick hair. When I was just on 5-FU, I had thinning but nothing major. While on CPT-11, I have had big time hair loss. I have never shed a tear over the hair loss. I look different, but I am alive and kickin! For many hair loss is a shock, but if you need a wig, get one. I just wear baseball caps. As I describe my new hair do, it looks like Julius Caesar. Many people tell me it looks cool. Just remember...it will come back. Terri
  • taraHK
    taraHK Member Posts: 1,952 Member
    #8
    Hi Mary,

    I had hair thinning, but not complete hair loss. I found it very hard, emotinally. Of all the things I went through (and they were many!), the hair thinning was one of the hardest for me. I cried. Seems 'silly', but it ain't.

    I got a wig but never used it. (An expensive insurance policy!). I did end up getting my hair cut shorter and eventually (after all the chemo ended) very short -- to allow all the healthy, thick, new hair to grow in nicely. The up side was that I didn't have to shave my legs or under my arms for several months!

    You are not alone - and its not easy. Best of luck with it (and the chemo in general).
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #9
    I didn't have hair loss when I was on just 5FU and Leucovorin, but I did later when I was on Camptosar. I looked like one of the Peanuts crew! Once my chemo was over I got a Marine hair cut because by the time I was done with the cycles new hair had actually started to grow in. I also lost all of my....ahem....hair "down there". But my head hair did look really cute once it grew out a little and I never new that I had "naturally curly hair", but I do! My hair had always been very long before that, and was very straight! Now it is long and straight again (almost 3 years later). The good news is - hair grows back. Try not to worry. It will force you to try different hair styles!
    Take care,
    Susan.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #10
    Mary,
    Well, with breast cancer backed up to my colon cancer, I first had thinning, and then, of course, with the breast chemo, complete hair loss.
    Yes, it WAS a shock...but I found some pretty scarves and cool hats...and then got comfortable and went out 'naked'. I thought at first that people would make fun of me and stare...instead, I had soooo many wonderful stories of survival told to me, and well wishes all the time! A woman's hair is part of her identity, BUT as I put it to one young lady...'If I have to loose my hair or my life, guess which one I pick???'
    One last thought, 10 weeks after chemo...I have a thick, gorgeous head of hair (eh, 1 inch long, but so what??) My point? All of this is temporary...
    Hugs from someone who had lost it all...hair that is...hehehehe!
    Kathi
  • goldfinch
    goldfinch Member Posts: 735
    #11
    Mary,
    Sorry you are going through this. I didn't have much thinning when I was on that regimen, but I did have so much thinning when I was on Camptosar that I had my husband shave my head and i went and got a wig. Hair grew back fine when I had to come off the camptosar. I'm back on it again with erbitux. Have only had 4 treatments and already I'm losing a bunch of hair. I'm going to hold off on the shaving this time and see how thin it gets. So far, no one can tell but me.
    I know what you mean about feeling down about this. The first time it happened to me I was really bummed. I felt the same way about the scars on my tummy. To think the only thing I used to worry about was a little fat on my belly. Now it's got 2 scars! But, you know what? Now, I consider them my battle scars and I'm quite proud of them. They show how strong I am and what a survivor I am. I thank them all the time.
    Mary
    PS. The good news about the hair loss is I don't have to shave my legs much. A nice thing in the summertime!
  • lfondots63
    lfondots63 Member Posts: 818 Member
    #12
    Hi Mary,

    Worrying about hairloss is not trivial. I keep saying that guys are sexy when bald but most women are not. My hair is thinning and I'm on folfox. I got my hair cut short so I can finger comb it which is better then brushing. It is still thinning. I was like spongebob. I asked if I could just loose it on my legs and under arms. LOL. Wigs are ok or scarves. You can get pretty ones to wear. Some wear hats too but it sounds hot in the summer. Take care and HUGS. We have all been there.

    Lisa
  • jsabol
    jsabol Member Posts: 1,145 Member
    #13
    Hi Mary,
    I was on 5FU and leuco also, and had a lot of thinning of my hair, but it did slow down and I never lost it all. I usually wear it short, so it was not too noticable to others, but I would clog up the shower! I never lost enough to look bald, but I felt like I had to brace myself for that possibility. I did lose almost ALL of the rest of my body hair: eyebrows, eyelashes, arms, legs. I hated not having eyelashes, and my eyes always felt irritated. I carried natural tears and an eyebrow pencil with me in my pocket! Towards the end of chemo, the hair on my head started coming in thick and curly (my hairdresser called it chemo curl). I figured any medicine strong enough to curl my stick straight hair was strong enough to kill cancer!
    Does your oncs office participate in the Feel Better Look Better (or something like that) from the American Cancer Society. One of my chemo buddies got fitted for a wig and had some makeup consulting, and it helped her out of the slump. Forgive yourself for feeling upset. This whole process stinks, and some parts just get to us more than others. You'll get through this and can look back and share your tips in the future!
    Hang in there; coming up on 2 years post chemo, I can promise that it does get better. Judy
  • scouty
    scouty Member Posts: 1,965 Member
    #14
    Hi Mary,

    Your hair problems are understandable. Remember 5FU (and most other chemo drugs) kills all fast growing cells, cancer and ones that we all need (skin, hair, mouth, and digestive tract get the blunt of the nasty side effects).

    My hair thinned greatly while I was on chemo, until I got it cut to an inch long. When it grew back it was thin and not healthy looking at all. Once I stopped chemo and started on my "new diet" with a really good B complex vitamin, my hair came back with an attitude!!!!!! I now have more body and much less gray hair then before I got sick.

    Lisa P.
  • KFalvey
    KFalvey Member Posts: 118 Member
    #15
    Hi Mary,
    I was on FOLFOX last year and started having hairloss. The nurses in my chemo office told me about NIOXIN Scalp Therapy Hair Conditioner. You can get it at JC Penneys hair salons, Walmart hair salons and I'm sure many other places. Call around, it worked for me. My hair is long and you just have to wash first, apply it on the scalp (it will tingle and smell strong like mint). Leave it on for at least 3 minutes and rinse well. It is also a very good conditioner. I liked it so much I continued using it well after chemo ended. I'm now on Folfiri and it has started thinning again, but my doctor told me I'd probably loose it all at 3 weeks. It's now week 5 and only losing a little, not enough to get concerned yet. I hope you will try it and hope it works as well for you as it does for me. Best of luck. Kandy
  • IzzieCat
    IzzieCat Member Posts: 56
    #16
    Thanks for all of your replies, you guys are great! I washed my hair yesterday, and it wasn't as bad as the time before. I wonder, is it worse right after getting a treatment? I had a visit with my oncologist yesterday, and asked him about it, and he told me that the thinning would slow down, even while I'm still going through treatment. Does this sound right? I normally have very thick strong hair, so if it stays the way it is, it'll be ok. But if it keeps up until November, I think I'm gonna have to do something. The texture has changed also. I can deal with feeling crappy from the meds, but, if I can at least make myself look halfway decent, it's helps me get through it. I wish I had a crystal ball..... ;-)

    Mary
  • Susanbm
    Susanbm Member Posts: 61
    #17
    Mary, I'm stage III as well and it's been 7 months since I finished my FOLFOX Treatment. I've always had very thick hair but it began thinning after a couple of treatments. For whatever reason, I still continue to lose my hair and it is now straight as a board. It's funny, as a teenager in the 70s I envied all my friends who had such long straight hair while mine refused to lay flat. Now, I have this beautiful straight black hair(okay, a bottle helps me maintain the color.) I'm NED so not sure why it continues to fall out, my doc says that it might just be because it is summertime. Of course, the stress of having cancer can certainly contribute to it as well. I also lost quite a bit of my eyebrow hair which never came back. Hang in there and remember, whatever happens, you are not alone!:)

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