hair loss/Taxotere

ohilly
ohilly Member Posts: 441
edited March 2014 in Breast Cancer #1
I am due to start my chemo soon which will be four treatments every three weeks of Taxotere/Cytoxin. I know you can't believe everything you read on the internet, but in the Forum (email discussion) section of breastcancer.org, some people wrote in that in a small number of women, taxotere can cause PERMANENT hair loss! Please, please tell me this isn't true! No matter what, I will still take the treatment because I have no choice and also my life is more important to me than my hair. But obviously I would be very upset if I lost my hair permanently. Please, please tell me this is not true about Taxotere and permanent hair loss! I am terrified. Ohilly

Comments

  • mrsbetty2
    mrsbetty2 Member Posts: 24
    #2
    Ohilly, I had 8 treatments 2 weeks apart of which the last 4 was Taxol.I lost my hair and what didn't fall out i shaved my head. I finished a year ago in January and my hair was back in May, so i didn't have to wear my wig anymore. It came in the same color only curly. I had never had curly hair so i was pleased. But after i had had it trimmed twice it went back to straight. Beleieve me i have never heard of anyone's hair not coming back. Good Luck and remember there is a bright side at the end of the rainbow. I had a sun catcher given to me that says After climbing the mountain you can enjoy the view. I really believe it. Will add you to my prayers. Good Luck And God Bless. Betty
  • bev49
    bev49 Member Posts: 42
    #3
    I also had 4 treatments, 3 weeks apart, and while I was surprised that I started to lose my hair only 17 days after the first treatment, I decided to get it shaved off so I could deal with it better. I also lost my eyebrows, and eyelashes, but all of it came back, ALL of it in just a few months. It came in so soft, and got very curly, and 2 1/2 years later, I still have lots of curl. Why don't you get prepared for this now, find a wig, get some really pretty colored scarves, or find a summer hat that makes you laugh when you see it. If you are all set ahead of time, it will make this transition easier. I wore a red hat with a big smile on it, and when other people would smile at me, I felt better. Hang in there chilly, your hair will come back, I will keep you in my prayers.
    Blessings,
    bev49
  • chenheart
    chenheart Member Posts: 5,159
    #4
    I was on the same chemo cocktail as you, plus Adriamycin. I too lost ALL of my hair...my Dr never told me that ANYWHERE I had hair, I no longer would! And I just never put the 2 and 2 together until I started losing it~ everywhere! It is an internal process, not an external one so there is really nothing we can do to prevent it! The best thing to do when it starts shedding, is to shave your head. It will immediately stop the mess of flying hair in the kitchen, or anyplace else you might be, and it will also instantly stop the scalp ache/tenderness.

    IT GROWS BACK!!! I also have never heard of it being a permanent side effect! What? Cancer isn't humbling eonugh, we also have to stay bald forever??? I think not! :-)

    My eyebrows didn't come in as thick as pre-chemo, but I laugh that I got a moustache in exchange! Go figure! So, I color in my brows, and wax the upper lip...it's always something, isn't it???

    Most of us go from Bald,to NewBorn, To Baby Chick, to Chia Pet, to Finger-in-light-socket to Finally a semblance of what we started with Before Cancer! I have every confidence that you will too.

    Hugs,
    Claudia
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
    I did talk to a gal with this experience...she is a 30 YEAR survivor, and they used mustard gas to treat it....I kid you not....

    My experience was similar to what has been said. I am now 2 years post treatment, and just today had someone else who had seen me thru all the treatments (bald, semi, etc) say "You look like you have never been sick a day in your life!".

    This is sort of like pregnancy. All the well-meaning 'advice' that scares the pee out of us...I HATE that!! Each person is different, and we all don't need to worry about stuff that may NEVER happen (80% of all the stuff we do worry about fits this)!

    Smile, laugh, stand proud and tall...most of the people who share these slimy details wouldn't be able to handle any of the stuff you are!!!

    Hugs, Kathi
  • Unknown
    Unknown
    #6
    Ohilly, you will lose it but, what they never told me was that it may start growing back even before you finish your treatments. The way I look at it, obsessing about hair is the best thing that we can do with our energy...because it has such a happy ending! I have see through peach fuzz and I am thinking it is almost time to start showing it off (trust me, it is not). As chen says, there are stages, mine were a little different - (1) able to be seen with a magnifying glass, (2) able to be seen with my glasses on and (3) able to be seen without my glasses. I gather there is a long time between stage 3 and stage (4) able to be tossed over my shoulder. But each stage feels great! Don't worry, laugh. Get in touch with your inner baby, you will get baby hair first, and baby, you're gonna be beautiful! love, Joyce
  • seof
    seof Member Posts: 819 Member
    #7
    ohilly,
    I have not heard of hairloss being permanent, though every individual is different as far as speed of loss or regrowth. I did herceptin/Taxol, then surgery, then Cytoxan/Adrymiacin (spelling??). I had my hair cut very short before I started chemo so the shock would be less, and the cleanup would be easier. I went to the local ACS and got a free wig that looked cute, but I have not worn it. I have scarves, which I use mostly to accessorize the hats. I never thought much about hats before, but I have found that I really like wearing hats. I have amassed quite a collection.

    I lost my hair gradually. I also lost it everywhere, just patches of fuzz left on the head. (My husband actually thinks that part is better during oral sex...if you know what I mean). It started growing back during the 4 weeks off for surgery...baby fuzz, but a dirty-grey color, yukkk! I lost that during the second round, down to shiny white scalp. I have been off of that since Mar. 21. Hair on legs is coming back, still waiting for the head hair.

    My sister was a survivor from 1999-2003. She had beautiful long hair which she cut and donated to locks for love which makes wigs for kids with cancer. You can contact the website for how to do that, or some hair salons will do it for you.

    If you think you might want a wig, I would suggest looking for an inexpensive one, in case you decide not to wear it much. I would say find a fun hat, and maybe a scarf or 2 to start with. That gives you a choice. Then you will find what you are most comfortable with as you go along, and you have not broken the bank with stuff you won't use.

    I have become know as the "hat Lady" at work, and some of my co-workers have had fun adding some of the less conservative (to put it mildly) items to my collection.

    My husband has shaved his head in support...saves a lot on shampoo!

    Hope this helps. seof
  • kbc4869
    kbc4869 Member Posts: 159
    #8
    Hi,

    I haven't heard about permenant hair loss either. I imagine that in a small percentage, it is possible. For most of us, it doesn't, so I wouldn't let this keep you up at night.

    For what it's worth, after treatment, someone recommended a shampooo and conditioner to me that is intended for people with thinning hair. It is supposed to promote hair growth and thickness. It is called Nioxin. Here is a website on the product for anyone who is interested; though you can get it in most salons:

    http://www.nioxin.com/go/en/product-information/product-categories/scalp-and-hair-care/

    I used it from the beginning and my hair grew about a half an inch a month. Now, since I used it from the beginning, I couldn't tell you how much my hair would have grown without it . . . but my hair did grow back relatively fast and very thick. I used it for the first six months. A word of caution: my facial hair also grew in thick for the first few months as well. Not sure if this had to do with the Nioxin, as this happens to some women as a result of the hormones coming back. Thankfully, I am very blonde, but in disgust had it waxed off at a salon until my follicles decided they had finished having their reunion party on my face!

    Lots of luck. You'll get through this.

    Kim
  • ohilly
    ohilly Member Posts: 441
    #9
    kbc4869 said:

    Hi,

    I haven't heard about permenant hair loss either. I imagine that in a small percentage, it is possible. For most of us, it doesn't, so I wouldn't let this keep you up at night.

    For what it's worth, after treatment, someone recommended a shampooo and conditioner to me that is intended for people with thinning hair. It is supposed to promote hair growth and thickness. It is called Nioxin. Here is a website on the product for anyone who is interested; though you can get it in most salons:

    http://www.nioxin.com/go/en/product-information/product-categories/scalp-and-hair-care/

    I used it from the beginning and my hair grew about a half an inch a month. Now, since I used it from the beginning, I couldn't tell you how much my hair would have grown without it . . . but my hair did grow back relatively fast and very thick. I used it for the first six months. A word of caution: my facial hair also grew in thick for the first few months as well. Not sure if this had to do with the Nioxin, as this happens to some women as a result of the hormones coming back. Thankfully, I am very blonde, but in disgust had it waxed off at a salon until my follicles decided they had finished having their reunion party on my face!

    Lots of luck. You'll get through this.

    Kim

    Kim, I looked at the website for Nioxin and it said you can use it DURING chemo to prevent the rapidity of hair loss. Do you know anything about this? I did email my doctor, but he didn't get back to me. Ohilly
  • chenheart
    chenheart Member Posts: 5,159
    #10
    ohilly said:

    Kim, I looked at the website for Nioxin and it said you can use it DURING chemo to prevent the rapidity of hair loss. Do you know anything about this? I did email my doctor, but he didn't get back to me. Ohilly

    I forgot about Nioxin...my stylist gave me some to use, but I didn't try it until afterwards. I am also not sure if it was the cause of my regrowth, but it sure didn't hurt!

    Not ALL chemo cocktails cause us to lose all of our hair~ some just cause thinning. This is generally not the case with the Cytoxin/Taxotere/Adriamycin combo. For the combinations of chemicals which do NOT cause balding, I would imagine that Nioxin would perhaps be beneficial. I do not however, think it will stave off the inevitable if we have the chemo which takes it all.

    Happily, so far, only Kathi has heard of (tho not experienced) the never-to-return-hair-horror-story. And it was mustard gas??? Yikes! We have come a long way, baby!

    Do not worry your pretty little head about it, and I mean that literally!

    Hugs,
    Claudia
  • chenheart
    chenheart Member Posts: 5,159
    #11
    seof said:

    ohilly,
    I have not heard of hairloss being permanent, though every individual is different as far as speed of loss or regrowth. I did herceptin/Taxol, then surgery, then Cytoxan/Adrymiacin (spelling??). I had my hair cut very short before I started chemo so the shock would be less, and the cleanup would be easier. I went to the local ACS and got a free wig that looked cute, but I have not worn it. I have scarves, which I use mostly to accessorize the hats. I never thought much about hats before, but I have found that I really like wearing hats. I have amassed quite a collection.

    I lost my hair gradually. I also lost it everywhere, just patches of fuzz left on the head. (My husband actually thinks that part is better during oral sex...if you know what I mean). It started growing back during the 4 weeks off for surgery...baby fuzz, but a dirty-grey color, yukkk! I lost that during the second round, down to shiny white scalp. I have been off of that since Mar. 21. Hair on legs is coming back, still waiting for the head hair.

    My sister was a survivor from 1999-2003. She had beautiful long hair which she cut and donated to locks for love which makes wigs for kids with cancer. You can contact the website for how to do that, or some hair salons will do it for you.

    If you think you might want a wig, I would suggest looking for an inexpensive one, in case you decide not to wear it much. I would say find a fun hat, and maybe a scarf or 2 to start with. That gives you a choice. Then you will find what you are most comfortable with as you go along, and you have not broken the bank with stuff you won't use.

    I have become know as the "hat Lady" at work, and some of my co-workers have had fun adding some of the less conservative (to put it mildly) items to my collection.

    My husband has shaved his head in support...saves a lot on shampoo!

    Hope this helps. seof

    I couldn't help but write you, seof! I am laughing SOOOO hard and trying not to visualize you and your husband, with him no doubt rubbing your fuzzy head! Not that you aren't speaking truth, but I was just so surprised to see it actually in writing! LOL I hope you don't mind, but I am about to read this OUT LOUD to my sweetie!

    Talk about making the best of a bad situation...and in case TechGirl peruses these threads, I think you just might have helped her with the intimacy question she posted! :-)

    Thanks for the grins

    Hugs,
    Claudia
  • seof
    seof Member Posts: 819 Member
    #12
    chenheart said:

    I couldn't help but write you, seof! I am laughing SOOOO hard and trying not to visualize you and your husband, with him no doubt rubbing your fuzzy head! Not that you aren't speaking truth, but I was just so surprised to see it actually in writing! LOL I hope you don't mind, but I am about to read this OUT LOUD to my sweetie!

    Talk about making the best of a bad situation...and in case TechGirl peruses these threads, I think you just might have helped her with the intimacy question she posted! :-)

    Thanks for the grins

    Hugs,
    Claudia

    I am happy to spread some laughter wherever it can be helpful.

    take care, seof
  • CindyPR
    CindyPR Member Posts: 36
    #13
    Hi Ohilly,
    Yes with any chemo it happens. Hair comes out, I had my head shaved, but it comes back beautiful. Chemo does that to us, and we have to accept. Breast cancer in both breast, on 45 at the time. I had to learn to accept. Hey wore hats, etc, but believe it will make you better. Be strong as I did, as was living in a different country, and wow it was foreign to me.
    Be good as have done it, and the hair goes. You deal as the best you can. Write anytime
    Cindy
  • Unknown
    Unknown
    #14
    One of the advantages, I would think, of shaving your head is that when your hair grows back it will all be the same length. I kept a few stragglers and had to clip them very carefully not to clip any of my new growth, which I prize above all else. But having them side by side showed how fine the new growth comes in. Just back from the store where I bought some Nioxin. Now I will shampoo and creme rinse my 1/3 inch hair with it (tangles, you know). love Joyce
  • Unknown
    Unknown
    #15
    kbc4869 said:

    Hi,

    I haven't heard about permenant hair loss either. I imagine that in a small percentage, it is possible. For most of us, it doesn't, so I wouldn't let this keep you up at night.

    For what it's worth, after treatment, someone recommended a shampooo and conditioner to me that is intended for people with thinning hair. It is supposed to promote hair growth and thickness. It is called Nioxin. Here is a website on the product for anyone who is interested; though you can get it in most salons:

    http://www.nioxin.com/go/en/product-information/product-categories/scalp-and-hair-care/

    I used it from the beginning and my hair grew about a half an inch a month. Now, since I used it from the beginning, I couldn't tell you how much my hair would have grown without it . . . but my hair did grow back relatively fast and very thick. I used it for the first six months. A word of caution: my facial hair also grew in thick for the first few months as well. Not sure if this had to do with the Nioxin, as this happens to some women as a result of the hormones coming back. Thankfully, I am very blonde, but in disgust had it waxed off at a salon until my follicles decided they had finished having their reunion party on my face!

    Lots of luck. You'll get through this.

    Kim

    I also used Nioxin. My hair grew in well also. Texture was a bit thin and angel hair-ish at first but then improved. Mine is still very curley which I have grown to like! I also experienced the thick peach fuzz on my face and waxed it off. But it is still thicker than pre-chemo and my leg hair used to grow back within hours of shaving but now it takes days. But I think these changes are due to my chemo-induced menopause. Don't worry though, your hair will return. Take care.
  • Unknown
    Unknown
    #16
    ohilly said:

    Kim, I looked at the website for Nioxin and it said you can use it DURING chemo to prevent the rapidity of hair loss. Do you know anything about this? I did email my doctor, but he didn't get back to me. Ohilly

    If its gonna fall out, does'nt seem to matter if its fast or slow. Less rapidly would just mean more sweeping and vaccuming!
  • Unknown
    Unknown
    #17
    ohilly said:

    Kim, I looked at the website for Nioxin and it said you can use it DURING chemo to prevent the rapidity of hair loss. Do you know anything about this? I did email my doctor, but he didn't get back to me. Ohilly

    If its gonna fall out, does'nt seem to matter if its fast or slow. Less rapidly would just mean more sweeping and vaccuming!

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