Chemotherapy Permanent Hair Loss
 

I would like to hear from any woman who experienced permanent hair loss from the drug Taxotere.

Re: Chemotherapy Permanent Hair Loss
 

Wull, I'm not a woman, but I have had permanent hair loss due to chemo. Before the chemo I had a pretty full head of hair, very thick. I even had a somewhat of a mullet. Been done with treatment for over a year now and all I have is some stubble on my head. My eyebrows still won't come back, nor can I grow a moustache. What is weird though is that I have the bottom part of a go-t, and its pretty thick. My onc says that I have had a very rare side effect and that most regain a full head of hair, sometimes even fuller than before.

Re: Chemotherapy Permanent Hair Loss
 

Hi Nancy,

I had taxol and while my hair has come back, it's thinned out around my hairline. I also have some funny little cowlicks. I do remember reading that some do experience permanent hair loss after taxol/taxotere.

Lexi

Re: Chemotherapy Permanent Hair Loss
 

I was interested to read that Lexigirl had some interesting cowlicks. I also have some "interesting cowlicks" that I did not have before.

Re: Chemotherapy Permanent Hair Loss
 

Since we're talking hair here.....After 8 months since my last herceptin, my hair has gone back 13 years in time. About 9 or 10 years before I was diagnosed my hair began to go from extremely straight to sort of wavy to a bit curly. I got the usual curls during the grow backs after chemo, but now more than 8 months after all treatment stopped, I'm back to my old head of hair from years ago. It is so weird. I had the waves for 10 years and then the curls and must say I had grown to like them. It made it so easy to do. Now my straight hair with tons of cow licks is back! I'm taking it as a great sign that my DNA is back to boring!
ma

Re: Chemotherapy Permanent Hair Loss
 

I have had a similar situation with curls and straight hair. My hair had been more frizzy than curly all my life, but easy to tame and wear curly. After chemo it came back darker (almost black instead of dark brown) with really nice soft curls----loved it. It has lightened some now, more my original color, but in the last six months has gone completely straight, thinner, and has the weird cowlicks. I've been off Herceptin since Jan of 07, but I'm still on Lupron and Arimidex. Hoping to stop Lupron soon and interested to see what happens with the hair (and my weight!)

Hope this didn't hijack your thread, Nancy, but it may all tie in somehow.

Re: Chemotherapy Permanent Hair Loss
 

Talk about cowlicks! Those are all over my head now that my hair is coming back. The texture is completely different. It was straight, fine, and thin. Now it is curly, dry, and much more coarse. I think it is darker also. I always wanted curly hair, so I hope some of the curls stay. Of course, I am just happy to have hair to cover my scalp! I had just not assiciated all those cowlicks with chemo hair, but I have learned something from all of you. I just knew I didn't remember having then before!

Re: Chemotherapy Permanent Hair Loss
 

Nancy,
Well...I was one of the lucky ones who did not have my hair return after my initial treatment with Taxotere. I kept cheering on every little strand, hoping that one day it would just kick in.

Never did.

Then I had the recurrance and am on Abraxane. Since it is a taxane based chemo, I am feeling any chance I had of getting my hair back is probably gone.

At times it makes me very very sad. Other times, I am pleased with my wig and feel OK about it.

My onc didn't say much when it became obvious that my hair just wasn't going to come back. Sort of shrugged it off as "well sometimes that happens"

So I can't tell you much. Let me know if you have any questions and I'll try to answer them to the best of my recollection.

Re: Chemotherapy Permanent Hair Loss
 

Nancy,

I was on Taxol (same family as Taxotere I think). I lost my hair with the earlier AC. There was some beginning growth back after Taxol, at first curly (unusual for me) and now not so curly. Only now (a year plus later) it is much thinner than it ever was. I struggle to comb/style my hair so that the thinness does not show. I'm assuming its permanent but don't really know.

Melanie

Re: Chemotherapy Permanent Hair Loss
 

After 2 years of Taxol, mine is returning...when I was at the bank the other day, the teller said my hair looked so "cute" with the light highlites...as in WHITE! I had to break down and tell her that this new hair is mine, no highlites, just the white gray after Taxol hair....what a difference from what I started with...dark brown / black....it has been 5 months and I am barely needing a haircut...but lots of cowlicks...kind of the woody woodpecker look!

Re: Chemotherapy Permanent Hair Loss
 

Thanks for all your replies. Taxol and Taxotere are in the same drug family but they are not the same. It sounds like Taxol has it's own hair side effects.

Re: Chemotherapy Permanent Hair Loss
 

I finished Taxotere one year ago. My hair is much thinner and the hair at my temples is dramatically thinner. I have some hairs growing in slowly there. I hope it doesn't remain like this. I was thinking of trying minoxidil or Ovation.

Re: Chemotherapy Permanent Hair Loss
 

I had Taxotere (doxetaxel) and carboplatin for 5.5 rounds, ending March 2009. My hair is still boy short. My eyebrows which were darker are barely there. My eyelashes are slowly growing back a darker colour. I still don't have to shave my arms/legs as often as I used to. My hair has always been wavy and it still appears wavy and a nice gray colour, but I wish it would grow faster. I still wear a wig. My real hair is about an inch, maybe inch and a half long.....and the cowlicked me too! Right smack in the back of my head. Hubby thinks it looks 'cute'. I look like a mental patient! I would never cut my hair this short. Maybe by the end of the year I won't have to wear a wig.

I did hear something about taxanes causing permanent hair loss. They should warn patients about this, don't you think?
Dianne

Re: Chemotherapy Permanent Hair Loss
 

Ruth has struggled with really thin hair ever since treatment. I've read literature that indicates that sometimes the tamoxifen or hormonal treatments are a culprit.

Re: Chemotherapy Permanent Hair Loss
 

My initial tx was 6 x taxotere, adria, cytoxan. (18 weeks). My hair came back the same thickness, density and volume as before, but came back grayer and more rat fur color than before.

Upon recurrence 14 months later I did taxol, carbo, herceptin. My hair came back again same thickness, density and volume, and my (new normal) rat fur gray brown.

7 months later I had to add taxol into my herceptin again, and I stayed on taxol until we switched to tykerb/xeloda 28 months ago (switching to tykerb/herceptin 1 year ago). This is the only time that my hair has actually grown back in different in density and volume. It is definitely very thin and less dense compared to my norm... but tykerb comes with a dermatological effect and telogen effluvium, and I have remained on it for 28 months, so I am not surprised my hair is a little challenged these days.

Re: Chemotherapy Permanent Hair Loss
 

I would like to hear from anyone whos hair regained thickness even after one year of taxotere it is thinner at the front but could change

Re: Chemotherapy Permanent Hair Loss
 

My hair has finally grown thinly very slowly but unfortunately with permanent bald patches, and receding hairline after 17 months post docetaxal so I do sometimes feel more comfortable in a wig. I have no eyebrows and very thin short eyelashes . I wish I had been warned as I previously had beautiful thick hair. I wore an ice cap with my first chemo in 2001 and I did not lose my hair.

Re: Chemotherapy Permanent Hair Loss
 

I am "hair challenged". First had Taxotere in 2000 for four doses. My hair grew back thick and curly. Mets to bones in 2001 and 6 months of weekly Taxotere, Herceptin, and Zometa (although I'm not sure the Zometa was weekly). After this my hair did not completely come back in and was very thin. I am still getting Herceptin and after all this time I have had some hair regrowth. From the front I have a normal head of hair although thinner than what I had previously. I do not have much hair at all in my crown so wear a piece to cover the hair loss. I really don't know why I have this problem amd haven't figured out what to do to make my hair thicken up. Wish I could figure that out. I do know that I am the only person I know personally that has this problem and I've met a lot of people in my 10 years in a chemo chair.

Re: Chemotherapy Permanent Hair Loss
 

I was on AC and herceptin treatments and my hair on my head came back but darker, much greyer thinner and tons of cowlicks too. I am a 5 year survivor now and I never got my eyebrows back. I have very few eyelashes and they are very fragile and fall out easily. I hate having to draw my eyebrows on every day. They never look the same twice and it is time consuming, (probably because I am a perfectionist. I won't walk out of the house without my eyebrows penciled in. I have tried the stencils and it didn't work well for me. If I had a real reliable referal I would get them tatooed in a minute..but it would really have to be a good referal. Anyone know anyone in Chicago area for this? I assume a plastic surgeon's office would know. As for our hair problems, the way I see it, I am thankful to have survived 5years and that is what really matters. There are great wigs, not that it is fun to have to wear one all the time, and there is great makeup out there to compensate for no lashes/eyebrows. Let the years just keep coming.

Re: Chemotherapy Permanent Hair Loss
 

Rina, I was very interested in your post. My hair came back thick, grey and curly. After 1 year it was back to straight. Now after being off chemo and Herceptin for 3 1/2 years it has changed completely. Now it is thin, falling out and I have so many cowlicks I can hardly style my hair. I had my thyroid checked and it is fine. So what's up with my hair??? I wake up in the morning and it is sticking up like feathers. I have my wigs from my chemo days and I guess I'll be wearing them again in the near future. I do have my eyebrows but they are thining. I use a light brown eye shadow to fill them in. I know how you feel. Mary L

Re: Chemotherapy Permanent Hair Loss
 

not complete loss-but my hair is much thinner than it used to be-

Re: Chemotherapy Permanent Hair Loss
 

The link in the post above goes to a legitimate site. It does focus specifically on TAXOTERE and hair loss.

Re: Chemotherapy Permanent Hair Loss
 

I learn so much from you all. I too was licked by the cow:) Kind of like the curls, makes it easy to style in the mornings. My eyebrows are still short and thin, my hair came back thicker so I'm hoping it doesn't thin when I finish my Herceptin. I too am glad just to have my hair back.

Re: Chemotherapy Permanent Hair Loss
 

My mom was on Taxotere for serveral years, the first year she had 54 treatments and now it has been 5 years since this long journey began and she is Cancer Free. She has been off of the chemo for well over a year and her hair is coming back, but it is so thin it looks to be the hair of a 80 year old man and she is only 52. Her chemo office told her she needs to see a specalist because they aren't sure why her hair isn't growing back.

Re: Chemotherapy Permanent Hair Loss
 

I had Taxotere. My hair has grown back really curly and so thick. The colour grew back awful- many grey hairs and an awful light brown. So had it all dyed blonde- too short for highlights! Hence, the signature name Blondie. Never thought I would suit the white blonde, pixie cut look. So have some fun, try a few different looks- you may be pleasantly surprised. Most of the people I have spoken to say their hair has grown back thicker.

(I have read that Vit D helps with hair growth- I take 3,000IU per day.)

Blondie

Re: Chemotherapy Permanent Hair Loss
 

I had breast cancer in 2008 and was given taxotere as part of my chemo treatments. It is now 2012 and my hair has not fully returned. My hair is very very thin, my eyebrows consist of a few hairs, the hair under my arms never grew back (that was a blessing), the rest of any hairs found on my body grow very thinly.

I know I should be thankful to be alive, but having gone through a rough divorce just before the diagnosis, was like icing on a bad cake. I'm tired of wearing wigs and bandanas, I'm tired of having to draw in my eyebrows daily, I'm tired of being afraid of sweating my eyebrows off, I'm tired of having to wear fake eyelashes when going out. It feels like i have a daily constant reminder of the cancer. It kind of wears on your self esteem sometimes.

I'm glad for this blog, because sometimes it's just nice to vent to people who understand what you're going through...thanks : )

Re: Chemotherapy Permanent Hair Loss
 

Hi there. I'm writing for whom I consider a friend. When I began my cancer journey she worked at the Cancer Center where I had my treatment. I could always tell she was wearing a wig, but I was never brave enough to ask but she came out and told me one day she too had been through breast cancer. This was well before Herceptin was available. She even took her wig off for me (I am crying as I type this because of her braveness) and showed me her bald head and with only 1-2 strings of lonesome hairs hanging down. From that point on, we had a connection. I found her a cool long, blonde, "harley girl" wig for her to wear when she's out on the bike with her husband and she was so thankful! All these years she's worn one wig, the same wig every day. Anyway, she is one who her hair has never grown back. Yes, that certainly did scare me as I stood there talking with her with my scarf on and bald as well. I can tell you though, I really don't think it bothers her so much but then again, I don't live with her or see her every day. She didn't even tear up when she told me. She has a smile on her face everytime I see her and is always upbeat. I know for some it's extremely hard to deal with. It depends on how you as a person decide to live with it. I don't know, maybe she's here, maybe she's reading this if so "HI WENDY! :) I wish you the best of luck.

PS, my hair has never grown back under my left arm either, but I don't know if that's from the Taxotere or the radiation.

Re: Chemotherapy Permanent Hair Loss
 

I totally understand about the hair and Taxotere. I wish I had opted for Abraxane instead. Slowly I am adjusting to the new thiness of my hair. I miss the thick thick hair that I had before - so convenient and it made me feel so much prettier.

Some women can adjust, but for others it really affects their self esteem and quality of life.

This is why I am so enthusiastic about clinical trials. We ladies need to join them, so that others in the future don't have to suffer the devasting side effects that we do.

I can't wait to see TDM-1 approved! and some of the breast cancer vaccines.

Hallelujah to the ladies that join clinical trials - to make the change!

Re: Chemotherapy Permanent Hair Loss
 

hi all, i am also unlucky, my hair has not grown back properly, i have what they called male pattern baldness, i finished my chemo last november 2011, i had four epirubicin/ cyclophosfamide and four docetaxol alongside herceptin. I have tried alpacin and minoxidol to no effect. i am going next month to have a biopsy done of my scalp to prevent this happening to others iif possible. I am on tamoxifen and finished herceptin last month, my eyebrows are very sparce and have to draw them on, also i have eye lashes but very thin and short. My leg, underarm and lady garden hair rarely needs shaving not complaning there lol. I hope to god there isnt a lot of ladies in my position, this is devistating after what we have been through, but i can hold my head up and say i am a strong person and i am blessed to still be here xxx love to you all, keep strong xxx

Re: Chemotherapy Permanent Hair Loss
 

I purchased on QVC a Joan Rivers product that you brush on your scalp to fill in those sparce areas. After a good coloring and a few dabs of Joan's hair blush, I'm good to go. I have also started to use the Aveda products that promote hair growth. There is a shampoo, conditioner, and spray that you use twice a day. The package was pretty costly but I felt that I saved a bit of change during my bald ACTH months! I was expiencing some hair loss before my diagnosis - not sure if it was pre-menopause or maybe the start of my bc.
Keep the faith,
Kim

Re: Chemotherapy Permanent Hair Loss
 

I have permanent hair loss from Taxotere. I have to wear headcoverings. I have no eyebrows and very few eyelashes. My hair is sooo thin there is no way I could ever go with my head uncovered. In Jan. it will be 2 years since my last chemo.

Re: Chemotherapy Permanent Hair Loss
 

janda, duga and lori, I am so so sorry about your situations.
I found the hairloss really really hard on me. It really pushed my emotions from the sadness of diagnosis (May 2011) onward into helpless rage (from the time I started chemo July 2011 on til chemo ended in dec). I never realized how fortunate I was to have hair come back til I read lori's post above.

Thank you for the humbling.

Re: Chemotherapy Permanent Hair Loss
 

p.s. in my pic, that was how my hair looked a few months before diagnosis.

Re: Chemotherapy Permanent Hair Loss
 

I am one of the unlucky taxotere hair victims. It happened back in 2005 and For years i would ask various oncologists what happened. All they would say is "this is not suppose to happen". I thought for years that I was the only person this had happened to until I had my first appt with Dr. Slamon in 2009. He told me between 1 to 3% of those who get taxotere never get their hair back. I struggled with being bald until I found the hair system I wear today.

Re: Chemotherapy Permanent Hair Loss
 

Look at this old thread! Wow, till I realized, I was totally thrown.

Nancy, Did I miss it? What hair system?

My hair is way thinner and I have male pattern baldness (loss of a hairline on top and upper sides). Not attractive. I cover as best I can, w/what I have been fortunate enough to recover from 8 mnths of Taxotere (back in '98). Used to wear a headband and everything back sometimes. Now -- not. Too weird looking.

My oily hair is now super dry. I moisturize w/ev shampoo, use leave in conditioner daily. My curls are back. Cowlicked too.

No eyebrows. Few eyelashes. Draw brows on every day, and say, Thank you for my life! Spend 10 minutes w/mascara primer and various mascaras to plump up what I laughingly call my lashes.

So instead of plucking brows, I must now tend my moustache. What's up with that?! Adding insult to injury I think. (Had to share...) We all need a hug.

Andi

Re: Chemotherapy Permanent Hair Loss
 

Nancy, My hair is very thin but also the fly away fuzzy kind. (This condition actually helps make my hair look thick unless I put it is a pony tail or bun.) Which started from the taxotere and arimedex didn't help it either. Now I'm on Aromasin and hair loss is the second side effect listed. Still I hope for the best. You mentioned a hair system you use do you mind telling us what it is and where we can find it? Thank you so much for sharing!

Re: Chemotherapy Permanent Hair Loss
 

I have a custom piece that is bonded to my head. So it is like having my own hair. I sleep with it, wash in the shower, etc. i go to the shop once a month. They take it off and rebond. When I am feeling okay I am an outdoor person. I don't ever have to worry about the wind or a wig moving on my head. I have to drive an hour to the shop but Bette, the owner, has been wonderful to come to my home when I have been sick, spends the night and does my hair in my kitchen. She has become a good friend. Here is her website where you can learn more about this option. It is not just for Hollywood celebs. I see all the women coming to her shop. I read somewhere that one out of every one hundred women suffer from some degree of hair loss independent of drug side effects.
http://www.grafftech.com/
If you call her, I am sure she can tell you if anyone near you is in this business. She has been doing this for a long time and knows others in the business all over the US.
Hope this helps. It is not cheap but I decided I would rather do this and cut back on something else.

Re: Chemotherapy Permanent Hair Loss
 

Nancy, Thanks again for sharing! I will call tomorrow,

Re: Chemotherapy Permanent Hair Loss
 

Hello everyone-
(sorry I can't get the bold off)
I landed here after doing a Google search on permanent hair loss following chemotherapy. While I am a breast cancer survivor, I am not HER-2 positive. I did, however, have Taxotere (last infusion 9/29/10) and most of my hair did not return. Just enough to look really stupid - male pattern baldness, thin, baby fine and very slow growing. In a word - it's awful. I have permanent makeup for eyebrows and liner. I do have enough lashes glob mascara on, but they're rather puny. I highly recomment permanent makeup (tattoos) for anyone and wonder why I didn't do it years ago.
I wanted to comment about the hair solution mentioned here. I know a woman who also did this (different brand, same concept). She loves it. When we met about a year ago and she told me about it, she also told me how expensive it was. My response was I could sure have a lot of wigs for that price. Now after 2 years of trying just about everything, I'm pretty sick of this and may look into it.
I'm interested to know about others' experiences and solutions. I am ER+ and on Arimidex and may switch to Femara to see if that helps. While they both have the same side effect of hair thinning, it might not happen on a different AI. I am, however, convinced it's the Taxotere because it was obvious my hair was not returning before I started Arimidex.

Thanks for any feedback. Hope you're all doing well.

Suzanne

Re: Chemotherapy Permanent Hair Loss
 

I am curious if anything worked for others. I have the Aveda shampoo, but not the other products. My hair started falling out in gobs at first with it . . . hmmmm. Minoxidil, Rogaine - expensive and not that effective.

Argh . . . I'd like more hair for Christmas.