taxotere and permanent hair loss

KAJDerby

I had 4 rounds of AC.  Lost all of my hair exactly 14 days post 1st chemo.  Started Taxotere.  I was originally scheduled for taxol, but with a spot on my lung and two on my collar bone the doctor said that the taxotere had a better result.  I had read all this stuff on here about the side effects of taxotere and it really scared me, but I trust my doctor.  I am happy to report that my hair started to grow back during the taxotere and is really thickening up. 

Chemo is very individual.  I read on here women who say that AC was a piece of cake.  For me, it put me flat on my back and I lost 15% of my heart function on it.  I never had a severe allergic reaction like some of you, just the usual se.  Anyway, everyone has to talk to their doctor, read, and read some more, make a decision and then don't second guess.  What works and is good for one person may not be best for you.

kittycat

Grace - I'm glad it worked out for you!   

nailgal2

I know the date of this post was in 2008 but I JUST read this and have to say that I, too, experienced the rare side effects of hair loss, (came back but much thinner) losing my nails completely (all 20..still in horrible condition 2 years after chemo), burn like skin rashes, Tear ducts closing up, and contracting double pneumonia "caused by drug toxicity".  Except for the more common side effect of hair loss I didn't know what to expect.  I was never told that any of these side effects could happen. I did read that taxotere "attacks your skin and nails" but had no idea the extent of that statement! I almost died when I had the pneumonia, but luckily 'twas not my time yet.  I do have to do deal with a lasting side effect... the tear ducts closing up.  I have had 4 surgeries on my tear ducts.. the final 2 surgeries were having "Jones tubes" put in..so my tears would have a place to go. My eye surgeon asked me right away if I was on taxotere... yet my oncologist told me nothing when I told him about my tearing issue.  I can not believe the oncologist did not know this could happen!  I am sorry about your hair loss but glad you are still fighting this disease!

Charley

!!! I "heard" about taxotere and permanent hair loss but didn't really think it would happen to me.  I wanted to stay away from AC and any heart problems. I like to run so I didn't want to possibly give that up. I had 6 DD TC.  Now its exactly 6 weeks since my last chemo and nothing!! Not all my hair (still have some stubble) eyelashes or eyebrows have fallen out but nothing is growing ... AT ALL! Now I'm afraid I am joining your ranks. I know I should give it time ...  <sigh> I'm using nioxin and taking biotin.

I'm going to the dr. on Friday.  Should I ask for minoxidil or is it too early?

Nailgal - Sorry you have had so many problems. I also had problems with tear ducts closing up.  It cleared up after 6 weeks or so, after about 3 dilations.  4 surgeries!  What an ordeal you have been through! 

anneoz

Hi Charley,

Although I am one of the unlucky ones with permanent hair loss more than 13 months PFC, I do think that it is definitely too early to worry. The odds are really in your favour: more than 90% chance that your hair will grow back. I have read so many of the posts and the time it takes for your hair to start to return can vary a lot - 3 months or more. 

And NO, I would not start using minoxidil or anything else on your head. It is so tender at this stage and you don't want to do damage. 

Charley

Thanks Anneoz, I went to my dr yeaterday and he did not recommend it either.  He told me that hair generally grows on a 4-6 month cycle ... never heard this before ... but he indicated it was way too early to start worrying about the hair loss being permanent. I guess if grows back it does, if it doesn't ... well then it doesn't. There are worse things for sure.

Hugs, Charley

Christina74

Hi!

Im a girl on 35 years from Denmark, Europe. Its now 1 year and 6 months after my last Taxotere and Im still missing a good part of my hair on the top and back.

Im very glad that I finally found something on the web. I have tried Nioxin, Minoxidil and others shampoo, vitamins, especially hair nutrients with no effect (although Ive got som beautiful nails now) and steroidlotions to the scalp, also some kind of radiation to my head and nothing helps. The oncologist says that this hasnt anything to do with the chemo, but i have NEVER missed my hair before. They just offers me a wiq! This is much worse than missing a breast.

Can anyone come up with some good ideas for treatment for the hairloss?

Does anyone have trouble loosing the hair in the bikiniarea and armpits? Sometimes after shaving there can go up til several months before it grows back. No trouble on legs. (luxury problem;-))

Hugs, Christina

hrf

The oncologists all seem to say it has nothing to do with chemo but I think it has everything to do with chemo. I'm in the same position as you, Christina - exactly the same problem. I'm still using the minoxodil but I don't think it's helping. The dermatologist wants me to continue for another 6 months so I will try more. Did you try the laser treatment for your head? That's the only thing I haven't tried yet. I asked about extensions but was told my hair was too thin and too fine for extensions. I've only been offered wigs as well but I don't want a wig.

kittycat

I can't believe the onco's have the nerve to say that this hair loss has nothing to do with chemo.  Sound like they need to be more educated about Taxotere.  I refused to take Taxotere because of this.  If my body reacts to Taxol, then I'll take anything other than Taxotere.  Has anyone heard of permanent hair loss with any other kinds of chemo???

Christina74

I havent got laser treatment, im getting what they in Denmark calls Bucky radiation (a kind of soft x-ray radiation) every 4 weeks along with Elocon lotion 2-3 times a week.

I havent seen any positive effect yet, so im still hoping.

Are there no one with any positive results on the baldness at this forum?

Hugs, Christina

anneoz

May31, you mentioned in your March 2010 post that you were planning to take minoxidil in pill form. As I too am considering this  I wonder if you did take it and if so whether this has helped your hair. Thanks a lot

hrf

I didn't know minoxidil existed in pill form. I thought it was only topical. Has anyone tried it in pill form and did it make a difference?

Firni

Taxotere is diabolical.  I'm 16 months PFC and I have the bald spots on the top and back of my head.  I have permanent swelling in my left foot.  My eyebrows consist of about 10 hairs for each brow and not where I want them.  My lashes are sparse and short.  The right eye has less lashes than the left.  Pretty much not even enough to put mascara on. I use so much make up just to make my eyes visible, I've developed blephritis.  My face has aged probably 15 years.  I have jowls and another chin I did not have pre-Taxotere.  I have wrinkles I didn't have a year ago.  I had every side effect in the book with Taxotere and yet I continued thru 6 rounds.  If I had known the long term effect of Taxotere would be an old,sagging, wrinkled, ugly, balding head I would have insisted on something else.  But it is the chemo de jour and it is going to take us, the ones who have long term ill effects to make that known.  Maybe other women won't have to suffer as we are.

Firni

I would be afraid that systemic Mynoxidel would create a wolf type of growth.  With my luck, I'd get tons of facial hair but still nothing on my head.

I have found out two weeks ago that my thyroid is super low.  I'm hoping that if that level can be brought back up, my hair might come back.  Most likely not, but a girl can hope. 

208sandy

Hi Ladies:

I too am having real problems regrowing hair after chemo - my last treatment was October 08 - my hair has come back somewhat but very sparse on top and back - also at hairline - one thing I did discover during my research (my onco never told me about hairloss and didn't mention neuropathy and nails turning black until I asked him point blank) was that Femara and Arimidex (I've been on them both and am now off them they made me that sick) both contribute to hairloss so on top of Taxotere you can just imagine what we're all going through and I am sorry but living without hair shouldn't be an option - don't tell us to be thankful - you aren't "us" - everyone is affected differently by cancer so we should all be understanding of one another and band together to get the drug companies to work harder on se's instead of obscene profits!

hrf

don't tell us to be thankful - you aren't "us"

208sandy - well said!!!!

crazy4carrots

I wish there were some way of determining who is going to be affected by permanent hairloss because of taxotere.  And, I also hope that everyone reading this thread makes a point of telling their onc at their next visit that taxotere can, and does, cause permanent hairloss.  Enough of oncs not telling us ALL the possibly permanent se's!  Especially since taxol seems to be a viable alternative.  I had a choice between the two and heck, if I had known then what I know now.....

Firni -- my brows and lashes are very sparse (oh, and the hair forgot to grow back on my legs and armpits, BTW).  Eyebrow pencil and powder fix the look of the brows, but I despaired of ever seeing decent eyelashes again.  BUT, I've been using a product called Ecrinal (a gel) on what lashes I did have, and it seems to be working.  Not too expensive; comes in a mascara-type container with wand and costs $20.  It might work for you.

Hugs to you all!   Linda

kittycat

I still can't believe that the onco's don't disclose the possible SE's of Taxotere.  I am so grateful for this forum.  I didn't know about Taxotere, until someone sent me a PM and directed me to this thread.  I am on Taxol and I have you ladies to be thankful for this! 

marcy4

I agree with Kittycat.  Because of you ladies, I refused to take Taxotere and was given weekly Taxol instead.  My oncologist said weekly Taxol was as effective as Taxotere, but suggested it was not feasible to handle that many patients weekly so it was not often offered.  He put in a special request for me and was able to get it after being initially denied. I am grateful for his understanding. He agreed that it could cause permanent hairloss, but it was very rare.  With the Taxol my eyelashes and eyebrows have thinned a lot over the weeks. I am doing 16 weekly Taxols. I have 6 remaining and am lucky enough to see my hair coming back in. I wish you all ladies all the best and hopefully some solutions will soon be found to help deal with the really nasty SEs of Taxotere.  At least if doctors were honest with us, we could make informed decisions about what drugs we are willing to take and what long term SEs we are willing to accept. 

Firni

Kitty, then this site has done its job.  I'm so glad you didn't take the chance with Taxotere.  I would not wish this hair debacle on my worst enemy.  

Firni

lindasa, where do you get the Ecrinal?  I've never heard of it.  Would it help if I rubbed it onto my scalp?

crazy4carrots

Firni, Ecrinal Strengthening Gel is made in Monaco and I purchased it at my local Shoppers Drug Mart (largest drug chain in Canada).  There are several Ecrinal products (sorry, I didn't look anything up on the net before posting this but I'm sure you could find something there).  There may be something for the scalp, but this wouldn't be it (it would cost you a FORTUNE anyhow because there isn't very much gel in this mascara-size tube and it needs to be applied every day).  I just read the directions (LOL) and discovered that you can use it on eyebrows too, so maybe I'll give them a try.

I did try a French product called Chronostim because of sparse hair on my crown -- used it for a month and it showed no signs of working.

enjoylife

Ladies I have read all the posts and I am in the group Taotears and what it all comes down to is MONEY they get more money for the Taxotere then Taxol and they dont want to have to deal with a every week schedule us loosing our hair doesnt affect them they dont have to live with us so that is why we have never been told I think money has got to do with everything not in my life god knows how much we have spent on trying things for our hair to come back hopefully what goes around comes around to them eventually..

Maura

Firni

Thanks lindasa.  I did look it up on line and there are a ton of products.  Ampules for the hair and the mascara stuff and skin care items.  Wow.  Now I'm just looking for the most reasonable prices.  I've already spent a fortune on my sorry hair.  I'm a little gun shy now of anything new and want to spend as little as possible.

Enjoy, you must have been that fly on the wall this morning at my house.  That is exactly what I told my DH. 

ktym

Can't put into words how much I hate what taxotere has done to my life (and I mean life, my health, my career, and many of the things I used to love to do)--so thank you ladies for saying it so well for me

LadyinBama

I am scheduled for Taxotere and you all are making me doubt my doctor. What option do we have besides Taxotere if they think that's the best drug for our particular case. Were any of you given other options? I meet with my doc again next week and I will tell him all I've read on this thread and see what he says. Has anyone confronted, or sued, the drug manufacturer?

marcy4

LadyinBama,

I was given weekly Taxol in place of triweekly Taxotere when I told my oncologlist I would refuse to take Taxotere.  My Chemo nurses, however, thought I should not question the doctor and just take the drugs he suggested. I stood firm on my decision. I thought it was my body, so I could best decide what choice I could live with. I guess time will tell if it was the right choice or not. 

Firni

I was not given other options and I did not know of the long term effects of Taxotere.  If I had read a thread like this one, I would have had a serious chat with my Onc and asked for options.

diana50

i was given TAC combination and know other people who got the same thing. i don't know anyone who has permanent hair loss from taxotere.  what is the percentage ? back in 2002 taxotere was experimental i got my chemo in a clincial trial with no problems except for regular side effects.

 i am sorry some of you are dealing with this side effect. for me, i believe that the chemo most likely has kept me clear for 8 years; along with rads and arimidex.

hrf

I have what seems to be permanent hair loss and permanent neuropathy in my feet. These se's appeared with the taxotere and have not completely gone away so I don't think it has anything to do with Arimidex. Also I had the C part of the CT during my first bc and I fully recovered from that. I was never told that there could be permanent se's.