taxotere and permanent hair loss

Firni

A woman I work with is starting to have some thinning hair at the top of her head.  Just due to age and stress.  She's so concerned about it and said to me, "It really affects how you feel about yourself."  Duh!!!  All I could say was, "You think?"

Ang7

Ladies~

I wanted you to know that I read your posts before I started TCH in March of this year.  I was able to use the Penguin Cold Caps and keep most of my hair.  I want to thank you all for putting this information out there and helping those of us as we are considering taxotere.  My onc. said everyone gets their hair back...

nikola

Vow, I do not know what to say. I did not want to write anything until I read all the pages. I am 42 and have a son of 6. I decided to go with double mastectomy to reduce chancec and for my son not to see me sick and tired througout his childhood. I have no node involvement, no vascular invovement. I was on the fence should I go for chemo or just go with Tamoxifen. My oncologist said You he would put me preventatively on chemo, one that does not have long lasting side effects and is easy on body. I believed him and I did 4 rounds of T/C. after my first chemo my WBC came to zero and I was on IV antibiotics for 3 days. My onc decided to give me Neupogen injections X7 days to bust my WBC after each Tx thereafter. My other SE were constipation and nausea. I am fatigued because my RBC dropped, too. My hair fall off on day 14, I buzzed the rest. My nurse put frozen gloves on my hands to prevent damaging nails, nothing on my feet but so far no problems.

My hair now, 9 days after last Tx is fuzz all around. I think I have more hair on top then on sides.

I am very disappointed in my care. I did mastectomy instead od lumpectomy and was directed towards chemo as something preventative. I specifically asked him for CMF (understanding that is the only one with no hair loss), for weekly Taxol> He said it is only hair and would grow back.

My son is only 6, I would like him to be able to cuddle with me in bed and touch my head without me being scared that my wig would fall off. I would like to go swim with him, run with him. Instead I am always making sure that my wig is at the right place.

I was able to pull through 12-hour surgery, through chemo and SE but I am not sure how I would pull wearing wig for the rest of my life.

I am sorry it is so long.

I think You are all very brave.

hrf

Nikola, sorry to hear what a difficult time you had. I know people with CMF and their hair also fell out. I've done chemo 2 x ... first was FEC and second was TX...both sux ...... but my hair grew back after FEC. I don't feel brave at all ... I'm distressed and upset all the time because my hair has not grown back ... words cannot express how I feel. This among some other things has caused me to go on antidepressants -- I can't ever put this behind me. No one seems to care.

jancie

((((((HRF)))))))  I care!  I really do which is why I keep following this thread.  I refused Taxotere because of this thread.  I wish there was something that could be done to help you and all of the other wonderful ladies in this situation.

crazy4carrots

jancie - I think maybe hrf meant that the medical establishment doesn't seem to care......There have been enough instances of permanent hairloss with taxotere for oncologists to sit up and take notice and maybe look at the research that has been done on alternatives such as 12xweekly taxol.  Isn't it pathetic that newly-dx'd patients have to actually tell their docs to look at the research?  Instead, far too many oncs tell patients "not to worry, your hair will definitely grow back".  And then, if it doesn't, they say "Gosh, you must be the only one this has happened to".......<sigh>

hrf

Linda is correct -- people here do care but the docs don't. At first my onc said "hair always grows back"  Now she says that she has several patients like me where hair doesn't grow back....but is just matter of fact about it. She's a great doctor and I feel confident with her but the docs just don't get it and don't seem to care &/or don't realize the impact of this. If I had known about this before tx, I would have refused this drug and gone with the taxol instead.  I get lots of support on these boards. You women are wonderful

crazy4carrots

Well, hrf, since 99% of us here know what it's like not to have hair, and have all gone through the anxious period of staring in the mirror with a magnifying glass checking for re-growth, we sure do care when one (or more) of us just doesn't see that regrowth happening.

Seems as though we should all be making a point of telling our oncs that "Yes, sometimes it doesn't come back because we know of women who are still without hair".  Maybe this is the only way they'll sit up and take notice and look more carefully at the long-term damage taxotere can do.

I had a choice of taxotere and taxol (or none at all).  I read up on both drugs before deciding, but nowhere did I read that taxotere can cause permanent hair loss.  That really makes me angry!

Hugs to you all,  Linda

Marrhea

Ladies,   It was difficult reading all your comments, as I see so much pain. I hope that 2011 will be a better year for all of you.   It's tough for a woman to have hair loss, especially if she has had beautiful hair her whole life. I understand why you feel such animosity against Taxotere, but I don't think your oncologists meant for it to harm you -- only to help you. (My oncologist went through a long list of options per my particular cancer, and that's what he came up with.) And maybe the side effects are real, but you're here!!   I grew up with very fine hair. I got married, had 3 wonderful daughters, and have lived my whole life with that situation. I was fortunate enough to have a wonderful hairdresser who was able to make me really look good and NO ONE ever knew, except, of course, my husband and daughters (and they didn't tell!!).   So, I felt that pain my whole life! And then, in 2009, I developed Breast Cancer and had a mastectomy on one breast. I had 4 Taxotere/Cytoxin chemo treatments, and my "hair" fell out before my second treatment. I had already received a wig from the breast cancer society, so I was prepared. So, there I was - really bald this time, and I started to wear my wig. Then I bought several other wigs - different styles, slightly different colors (never got to frost my hair before, but now my wigs do that for me). They weren't expensive either - TLC and Paul Young have great wigs.   And I am Cancer Free - NED! So, how can I be resentful!! You really gave Brenda a hard time because she said "she's bald, not dead." Listen to that phrase and thank G-d every day for the good fortune that you have. My whole life has changed and for the better, too. I help other people who are going through similar times. I laugh all the time, and enjoy every moment with my family and friends. And you know what---I look better than I ever did!!!!! Look at my picture. That's me with one of my wigs, and guess what---I'm hot! And guess what else - I'll be 73 in March!!!   So, ladies, I know you want to pursue this Taxotere thing, and I hope you get results. But I also hope you see yourself in a different light.

hrf

Marrhea, I can't believe you are almost 73. What is your secret? Share with us.

Marrhea

Dear hrf, Good genes, I guess. But I really feel that my attitude makes a big difference. As I mentioned before, BC changed my life -- and for the better. I had reconstruction and am now known as "Perky" in my neighborhood. I live in a Del Webb over 55 age community, so we all take care of each other. As soon as I was diagnosed, I formed a "Helping Neighbors Heal" group where we all help each other. I'm in charge of the Prayer Group, and we have a Meals group where we prepare meals for those who need it after surgery, etc. I had meals coming in for over 3 weeks when I had my surgery! Also other support groups if you need a driver or any type of help. Doing this has been amazing for me. In fact today, one of my neighbors came over to tell me she has tongue cancer and will be operated on this Monday. I helped her by asking her to stay positive and reassuring her and then I immediately sent out my Prayer Chain email. We have some very spiritual people here who believe that our joint prayers have really helped, AND THEY HAVE!!

Let me also say that I NEVER cried when I got my diagnosis. I knew that I would be directed to the right doctors and would be fine. I only cry when people do nice things for me! All my doctors are amazing, and believe it or not, it's a pleasure to visit them (and their wonderful office staff), as I plan on doing for at least another 15-20 years!!

So, being bald is a piece of cake for me! My few gray hairs are not pretty, but when I look in the mirror, I just laugh! So what!!! I've got beautiful wigs, I'm healthy, I've got a wonderful husband, wonderful kids, wonderful grandkids, and a whole lot of great friends here where I live. Life is wonderful!

That's what keeps me young. Please take that same attitude, and you will see how wonderful life can be!

 By the way, I forgot to thank you for the compliment - Thanks!!! 

shirleyl

Marrhea, as you are in your 70's it obviously doesnt affect your life like it would if you were in your 20's 30's etc.

Imagine trying to find a partner and live the life of someone who is in their 30's looking like this!

www.igr.fr/service.php?p_m=download&p_file=enseigner/2009_pdf_affichers_ms/robert03_mmb.pdf

LtotheK

I just want to shout out and give my support to hrf and all the gals here.  Hrf has always exhibited real kindness towards me, even on threads in which most of us are getting our hair back.  I am deeply compassionate about this topic.  Hair is the thing that signals to the rest of the world we are healthy.  And some people still treat BC like a communicable disease.  I'm thrilled some people can forge ahead, move on, and be happy, but there are so many things to grieve in this game. 

I'm so excited to be done treatment, and yes, it seems like my hair is coming back (although it was by far the slowest of my group, and is still baby-fine with weak spots 4 months PFC).  However, believe me, I notice every day that people still stare at me.  No one sees me take my Tamoxifen in the AM. What they see is my hair.

Wigs are not an option as a 40 year old with hot flashes every few minutes.

Booblet

OK, deep breath,  I just learned that I likely will not get my hair back.  It's been over 11 months since my last Taxotere treatment and until this very moment, I still had hope.  My stomach is nervous, and I am being overtaken by what I call a soap opera meltdown right now.  Just had no idea that this could happen.  I am maybe one of the lucky ones though.  My husband from the start encouraged me to go bald, without hat, scarf or wig.   Over time I became braver and noticed the support I received from my family and friends to go bald, and I eventually came to a place where I was pretty much comfortable to go anywhere bald.  This did give me a new sense of freedom and maybe even empowerment.  However, I had no idea it would become permant!!  I have been so looking forward to even a little pixie cut.  This is incredibly dissapointing.  Alright, must get a grip.  Just been "bragging" lately about how the only thing you can change is your attitude, so, once again I have an opportunity to do just that. I am 49 years old, was diagnosed Feb/09, had a recurrence of inflammatory breast cancer in June/09 and since September/10, have had metastatic bone cancer.  I am the kind of person who researches everything, but never came across this thread until now.  Well, I'm off to change my attitude yet again.  At least I know I am not alone.....and yes in the broad scope of things it is minor.  

Linda

Marrhea

Dear Shirleyl, You obviously did not read my first post thoroughly. I said I grew up with very thin hair even in high school. Yes, I wasn't bald, but I might as well have been. My hair was so very thin that I had to resort at first to restyling my hair to the side. Then, I had to wear a hairpiece. So, when I got BC in my 70's, off came the hairpiece, and on came the wigs!   I know what it's like to date when you don't have a crowning glory! I could never wear my hair down or change hair styles. I had to fool a lot of guys  who never knew. But when I met my husband, he knew that I wore a hairpiece. And he didn't care. I met the right man.   So, I guess it's finding the right man that makes the difference. I know there are a lot of other women out there just like me.   Maybe it's time for me to tell you my "funny" story!!!   Several years ago, when in my 60's, I sort of asked G-d, jokingly, to maybe come up with some sort of cure, medicine, etc. so that I could finally have some thick hair in my old age. Well, G-d didn't answer me right away! And sometimes G-d doesn't answer the way you think you should be answered. So, in my 70's, I now have thick beautiful hair and look great!!! Not exactly how I planned it, but I did get my wish!   I tell this story to my friends now, and we all laugh.   Please laugh, too. Please try and adopt a good attitude in life so that you can enjoy life to the fullest. I only wish you the best.

Ang7

Oh Marrhea~

You definitely have a good head on your shoulders...

When I read that some people who use taxotere NEVER get there hair back, I researched and used the Penguin Cold Caps because of this thread.  I am in my 40's with 4 children.  My heart aches when I read the posts by some of these ladies.  I know the oncologists are there to help you but I just feel it is not fair that they do not disclose this information.  My doctor told me my hair would grow back.  This was before I said I was going to use the Cold Caps.  She did not tell me any statistics about people where their hair did not grow back. 

I try to be a positive person.  I just feel that there is not enough truth out there when it comes to using Taxotere...

enjoylife

/dear Bobbet I am so sorry I am too one of us but you have been though much more with it coming back and you are a young age of 49 I thinnk what we all need besides our support system taxatears website they have picked me up when I have fallen so much we all need to get a plane ticket and plan a weekend visit in the middle of the states I say states becuase I know I would never be able to go to europe but it does seem like those ladies travel allot god bless them we all need to hug each other I know I have been talking to all of us since fall of 08 when i started to wait for the hair to come back and lived in denial I still have hope most days now I go by seasons maybe after winter etc I will figure it out its not going to take my happiness away its just not going to win like a devil winning ...try and get back up and we are here or should I said hairless pardon the punnn

Maura

kittycat

I am still very grateful for being directed to this thread and being educated about Taxotere before starting chemo.  I refused to take it and was put on Taxol.  I really didn't love my hair pre-chemo, but I'm so glad it's growing back.  Ever since my sister went on chemo (she had bc before me), I never complained about having a bad hair day.  I really feel for those of you who didn't get their hair back.  Ugh...

Here's to a much better 2011 for all of us!!!

Marrhea - I've used my cancer experience to help educate others about bc awareness.  I did my first speech for Susan G Komen last week.  I'm glad you were able to turn your bc into something positive. 

Marrhea

Dear Kittycat,

You certainly  have the right idea! While you take care of yourself, you take care of others. I've been fortunate to help other women who are going through bc. They call me, and I'm there for them! Having bc can change your life for the better - you just have to know what's important! I learned a wonderful phrase in grammar school "vicissitudes of life." It means the ups and downs of life.  Believe me, all of life has its ups and downs. You just have to learn how to get through the tough times. Then the good times will be wonderful. Having hair or not has nothing to do with LIFE! You just need to learn what that means!!! Love and prayers to all of you! .

kojackie5315

Booblet, 

I am so sorry to hear that you have had to cope with this devastating--and undisclosed--side effect. I don't have a single hair on my body nearly two years post chemo. I, too, did my research prior to my treatment, but was repeatedly reassured that my hair would return. I was kind of looking forward to the adventure of losing my hair--temporarily--but then getting it back and getting back to 'normal'. Now I look like death warmed over. If I had been informed that permanent hair loss was a possibility, I would be coping with it much better. But it's a real psychic assault when you are assured of one thing... then entirely the opposite happens. As we all know, cancer treatment requires significant mental preparation to endure the invasion to your sense of self. I would have had more information about buying a pair of shoes!! Unfortunately, my health--and my hair--is a FINAL SALE.  

crazy4carrots

Marrhea -- I admire your sense of self and your joie de vivre!  But I hope you don't mind if I take issue with your saying "Having hair or not has nothing to do with your life".  You have lived your entire life with a form of alopecia and you have made the best of it.  For those women who took taxotere, endured the baldness and all the physical and emotional upheaval of a cancer diagnosis and treatment, it's devastating to find that their lives are indeed changed by knowing they will never have a full head of hair again.  It does have a lot to do with their lives, with their identities, with their womanly appearance, and with the stares they inevitably endure.  Will they learn to live with it and enjoy their lives again?  I definitely and fervently hope they will, but it will take time amidst all the disappointment and anger they must be feeling.  In the meantime, I think they deserve all our sympathy and understanding.

I also had taxotere, and my hair grew back very, very slowly and is much thinner than it was before BC.  It never grew back under my arms or on my legs (which I don't mind a bit!) but I could not wear wigs and I would be knee-deep in depression if it hadn't grown back on my head. 

Ang7

lindasa~

Your words are exactly what I was trying to say but didn't know how to say it.

Thank You.

Ang7

kojackie5315~

I'm sorry.  Your story could have easily been me.

This is what I am trying to make my oncologist understand.

208sandy

Lindasa -

Thank you so much - you said it all and said it right!  I really get upset when I hear "it's only hair" or "keep a positive attitude" or "you can always wear a wig".

Hugs, Sandy

hrf

booblet, sorry to hear that you are in this position too. I also appreciate the support and understanding I get here. You are the only people who understand....sandy and linda said it well. MHP and others -- the least we can do for each other is to show compassion because it's so hard for others to understand. I do hope more women become aware of options and that the onc's tell the full story. If the cold cap works, then everyone should be able to use it.

Marrhea

Dear lindasa,

I'm afraid I'll have to take issue with you. I have lived my whole life with very thin hair. I did not have bc at that time, but I was a teenager trying to fit in with all the beautiful hairstyles around me. Think what that would be about in high school!!! And yes, boys commented on my thin hair!!! If you don't think that was tough, think again!! And then as an older adult, I developed bc and lost my hair completely. I endured the baldness and the chemotherapy, too. I went through the back pain, nausea, loss of taste, etc., etc. that goes along with chemo. All the stuff that you say that follows, I went through, too. I just have a different attitude. And I'm sorry that some of you cannot understand my attitude and try a little positiveness on your own.

I'm not going to comment anymore. I thought I could be of some help, maybe for some of you. I wish you all the best and hope that life will be beautiful for all of you.

crazy4carrots

Marrhea -- I made reference to your lifelong experience with thin hair (a form of alopecia) and I also said I admired you for your attitude.  It isn't that we cannot understand your attitude, it's just that having chemo and finding out that it destroyed your hair and that none of it will return must be exceedingly difficult, and a little understanding and sympathy for those who are experiencing it would be helpful. For those women, their hair does indeed matter to their lives.

Wishing you the best,

Linda

shirleyl

Marrhea - i am sure growing up with thin hair is not easy , howver its not the same as seeing cancer/chemo everytime you look in the mirror!

Only people that have lost their hair with Taxotere can truely understand how it feels, and someone trying to live their lives in their 20's,30's etc (with this problem) cant be compared to life of someone in their 70's no matter how postive and wonderful fullfilling their life is.I am very happy that your life is so amazing but people suffering from alopecia is just not the same as someone trying to live their life with alopecia caused by chemo. Especially when we have been lied to by the drugs company and we were not able to make our own risk assesment and decided for ourselves wether tomake the choice or not.

kristina1973

Hi there, i just found this community. Please forgive if my English is not so good, but I'm from Germany. Two years ago I had to start chemo. The tumor board recommended 3xFEC and 3xTaxotere. At first I didn't want to do the chemo. But after I went to another onc for a second opinion I changed my mind. I searched the whole www for informations about FEC and Taxotere. I wish I would have found this site before I started Taxotere. I'm not totaly bald, but I have only about 1/5 of the hair I had before. I had very thick and healthy hair before (and lots of hair) and now everybody can see my scalp through my thin hair. At first my hope was that with the hormons (my cancer was HER2+) the rest of the hair would come back. But 5 month ago I went to the university hospital and the doctor there destroyed my hope. 

I know that I should be happy that I'm not totally bold, but I really miss my hair. My self-confidence never was very good, and my sparse hair does not really help!!!

 I really think it is a crime that nobody informs us that taxotere can cause permanent hair loss. If I would have known that before I would have refused to use taxotere!!!

nikola

Kristina I am sorry You are going through this. My onc did not mention anything about hair-loss either. He even told me hair is coming back for sure. I am 15 weeks out and it is coming back fine and straight, but my hair was fine before, too.