taxotere and permanent hair loss

enjoylife

Kristina my hair dresser I had before this happen to me cannot believe this has happened she is like a politician and this isnt sitting well with her she is going to investgate with us someone is listening that has a head full of hair and she is also looking into extensions with me and she has a entire book about the anti cancer drug for me to read but what are we to do listen to medical experts or take our chance on a book I am confused about that part...I am so sorry you have been alone all this time please come to Taxatears the lady who made this thread created taxatears you will be cuddled and understood..

hrf

enjoylife, I checked with a couple of places about extension thinking they would make my hair look thicker/fuller. But both said that I couldn't have extension because my hair is too thin. There goes another idea!!! If your hairdresser finds something, please let me know

carol1949

I am a long time hairstylist who also has had experience with thin hair through the years.  While I understand Taxotere may be responsible for some of this permanent hair loss, I didn't notice if any of you are on other medications which may also contribute to alopecia.  (Synthroid, some anti depressants, blood pressure meds make hair extremely weak, etc.). 

There are many products that may be helpful.  I have had very good results from Phyto products.  They can be purchased from some upscale salons and also Sephora and Ulta on line.  Also inositol, biotin and hair vitamins are sometimes helpful. 

My hair got immediately thin from Femara, and also was thin from Synthroid.  I switched to Armor natural thyroid, and stopped taking the Femara and my hair density increased by about 30%.

Paula Young wigs are very inexpensive.  On the high  end are Amy's Presence which were made for a soap opera star who had alopecia.  You can even swim and sleep in them, but they are expensive.  You can get good integration pieces for around 3-400. also for those of you who have any hair.  Integration pieces are different from extensions which are meant only to add length. You can also get inexpensive integration pieces from Paula Young.com  

Here is a link to the Amy's wigs.

www.amyspresence.com/

I wish you all well, and also encourage many of you to explore some holistic approaches to healing your body, mind and spirit!  I have found Caroline Myss and Louise Hay to be very helpful in healing my spirit which in turn heals my body!!

Marrhea

I know I said that I would no longer comment on this forum, but  2 posts really upset me - lindasa's 1/6/11 and shirleyl's 1/7/11. I did not reply right away as I had my oncologist appt. coming up and I wanted to talk to him about this situation.   First of all, the comment that "someone trying to live their lives in their 20's, 30's etc. (with this problem) can't be compared to life of someone in their 70's no matter  how positive and wonderful fulfilling their life is" is unbelievable. Do you think that a young teenager girl with very thin hair cannot understand what that means?? Do you know what it would be like to have very thin hair ALL YOUR LIFE and try to fit in? Trying going to high school, try hoping to style your hair so that no one notices, try hoping that you'll be asked out on a date. You  have no idea what it was like! Wigs were not in vogue for teenagers - just bouffant hairdos (in my day) and all sorts of cute styles. I couldn't do any of that. I had to work very hard every day to see that I could look the best I could. Eventually, I couldn't go swimming underwater, couldn't get my hair wet if it rained, because it would "show." Yet, I had wonderful friends and had a happy life in high school. Yes, I made it that way!!! And if you don't think that's the key to all of this, I feel sorry for you.  After my children were born, my hair got much thinner. At that time, I was able to get a hair piece and use a wonderful hairdresser. Nobody really new, except, of course, my husband, and a few friends. Thank goodness for that hair piece!! (But I still had to be careful with my hair - made sure it was teased properly, etc.)   Now, I'll interrupt my speech to tell you about my oncologist. I live in the greater Chicago area, and he is well known by all other doctors and well renown. He treats one of my neighbors who has been going to him for over 7 years with different types of cancer that keep coming up. Yes, this oncologist is saving his life. I told my onc. about this forum and the fact that some people say that Taxotere produces permanent hair loss. He said he never heard of that - only that chemo drugs do produce hair loss, but eventually it grows back. His said that permanent hair loss can be attributed to other extenuating factors such as a thyroid condition,  anemia, even chronic illness or the use of certain medications can also cause hair loss in women . Also, sometimes the combination of several chemo drugs can cause permanent hair loss. As I mentioned earlier, he went through pages of info, checking my numbers, etc., until he found the right chemo drugs for me - Taxotere and Cytoxan. What if he asked me if I wanted these drugs even though they might promote permanent hair loss? What if he offered me other chemo drugs that might not be as good for my condition but no permanent hair loss? Now what would you do with that situation. Take the "bad" chemo drugs and live a long life or be buried with a full head of hair?   I must now comment on Carol192 1/24 post. She said everything I tried to say, and she has a great attitude. That's the key to all of this. Thank you, Carol!   I only got on this forum to help you try and live your life the best way. Just because you think that a person in their 70's is just too optimistic, you're way off. Remember, I had bc, too (even though I'm in my 70's!!!). I also see cancer/chemo every time I look in the mirror!! Life is tough! That's something you learn when you reach your 70's. It's full of ups and downs, and if you think you've had enough, be prepared. Everything does not run smoothly in life, but if you learn how to handle those tough times, you can get through anything. Believe me, I've had lots of tough times. One of my daughters went through a horrendous, horrendous divorce (I won't go into details, but it was tough). I had to talk to her every day to help her survive (literally). This went on for over a year. That was "tough times." Thank goodness, she's fine now, stronger, happily remarried, has a great job and laughs again.   So, my main purpose is to let you know that you can get through this. Start by taking a good look at life! Be as active as you can, take care of others, laugh, be optimistic. You can be angry at Taxotere, but then laugh and be happy you're on the road to recovery.   The other night, I was channel surfing, and I came upon the Miss America program. I watched it for a laugh, and then I couldn't believe what I saw. Please look at the following videos of Miss Delaware. This is how you must react to what life gives you!!   Click here: Miss America 2011 bald? Miss Delaware is bald, beautiful, and proud! - Hartford Pop Culture | Examiner.com   Click here: http://perezhilton.com/2011-01-12-miss-delaware-kayla-martell-speaks-about-being-bald-and-beautiful-and-her-plans-   So, this will definitely be my last post. I have no more to say except I wish you all a happy, HEALTHY life. Strive for it!    

bdavis

Carol...When you say some high blood preasure drugs can interfere with hair, do you have a specific drug in mind?? I am on Norvasc and HCL Chem has actually lowered my blood pressure, who'd have guessed... so if there could be a hair/drug interaction issue, perhaps I should propose a hiatus in BP drug with my doctor??

 And Marrhea... well said. I agree that hair or lack thereof does not discriminate, and hair loss at any age is very difficult. I for one knew the risks before taking Taxotere and have chosen to take it anyway as I want to live for a very long time, and it is the best drug for ME... and I agree, I'd rather be alive and bald than dead and hairy... And even though I could have chosen Taxol which could have been as effective as Taxotere, I didn't want to risk chronic neuropathy...  would rather have my mobility than hair...but hoping for hair too.

lago

Marrhea I too am being treated in Chicago. Not sure if we are going to the same place but as you know there a several great placed to be treated here in Chicago. I just had an appointment with my dermatologistlast week because I am having a really bad reaction to taxotere with all my nail beds. Anyway he did seem to know about the permanent hair loss. He said it is very rare but did confirm it can happen.

LadyinBama

bdavis: Ditto. My onc said there was a 100% chance of neuorpathy to some extent (minor to  major) with taxol. Since I'm an active person, I didn't want to risk pain or loss of use in my feet and/or hands. Bald, I could handle. Put on a hat and go waking; but I couldn't do that if my feet were on fire with pain. So, while it's not a great choice, I chose Taxotere too. My hair is coming back on the sides but the top is still pretty bare. But I'm just 7 weeks PFC.

Marrhea: My mother fought thin hair her whole life too. And when she was 77, she had to go on dialysis and it took just about all the hair she had left. So I know how frustrating it is to try to do something with very little hair as I used to try and fix hers for her. It wasn't until she was older that she could just put on a cap and go and look "cute". She was a little lady, very grandmotherly and sweet, so she could get away with it

enjoylife

Marrhea if you went through this in high school and got through it you can get through anything kids are the meanist at that age and I cannot imagine how hard that was for you. I am not giving up I am seeking all kinds of info to fix the problem and if there is no fix at least I can say I gave it my all and if we just complain about it we cannot fix it at all now a day there are so many optons so many to help us live better so I am starting with Extensions today is my first and wont be my last consultation we have to fight for what we want as we taught our children too. You did it and we can for sure in what ever way we find ...

Ang7

I just wonder why Miss Delaware wore a wig for the pageant?  If she is comfortable with herself? 

I believe it is our society that makes people feel "different" for not having hair.

That is a shame.

I chose to take Taxotere and use the Penguin Cold Caps because that was the right decision for me.  My point is that I was able to make this choice.  Some women took Taxotere without that opportunity...

crazy4carrots

Well, I'm truly sorry if any of my posts on this thread upset people.  Obviously (and for reasons I am at a loss to comprehend) Marrhea was upset by them.  I complimented her on her attitude and outlook, but suggested that a little empathy might be in order for those of you whose hair has not returned and who are learning to cope with that.  Sometimes having hair really does matter a great deal to an individual.

Ang7

lindasa~

Your posts did not upset me - I agreed with them...

Empathy is the right word in my opinion.

carol1949

bdavis,  I Googled Norvasc and it says alopecia is a possible s/e of the medicine.  I am certainly not a pharmacist, but having been a hair stylist since the late 1960's,  I have noticed the similarities in people's hair over the years.  For several years now, I can pretty much touch someone's hair and tell you if they are on blood pressure meds.  I am not familiar w/ the other one you mentioned. 

As I mentioned, there are so many other factors that can cause hair loss and  weak hair.  It would be almost impossible to say it is specifically taxotere.  Trauma can also cause hair loss and/or cause a person to become totally gray overnight!  I have seen it, and have friends who are nurses who have as well.  Cancer and surgery is certainly trauma!

I encourage everyone I meet to work on your body, mind and spirit.  Breathe, relax, and dwell on the positives in life.I have a dear friend who is also a bc survivor who told me: " No one is guaranteed anything more than this moment of this day."  I choose to enjoy the moment!  Everything is as it should be!

bdavis

Carol... Thanks... I will discuss with my doctor... the other drug is hydrochlorathiazide (HCL)

shirleyl

Marrhea - you misunderstood me - what i  meant was anyone in their 20's 30 ' its more difficult for them than someone in their 70's.

If your oncologist has NEVER heard of it then i am afraid he is very out of touch with whats happening in the chemo side effect world and needs to keep up with the latest ! I would recomend, for the sake of giving his patients the CHOICE and latest infoand of making their own risk assesments, that he should contact the San Antonia breast cancer symposium for the info on this problem. This will bring him up to date with everything.

cinnamonrocket

I have experienced permanent hair loss after 4 rounds of taxatere. I am not on any other medications and do not have any other problems ... ie. thyroid. My oncologist is also well known and a leader in her field. She told me that there was a 5 % chance my hair would not come back after taxatere but that was after treatment ended and it didn't come back. I still believe taxatere saved my life so I am so grateful for it but do have empathy for people who suffer from this problem.

Ang7

Hey cinnamonrocket~

I am so sorry you have to deal with this.  It is so unfair that you were told AFTER your treatment ended.  I was told before my treatment only because I asked/harassed them about it.

This has got to change.

carol1949

cinnamon,  I am just curious.  Are you que ball bald, or do you have any hair at all?  The reason I am asking is I wonder if any of the hair growth products could enhance any hair you might have.  Many times, the folicles seem as though they are dead, when they may be just dormant.

I know I had a very thin spot on the top frontal area for years and I thought there was no way the follicle could produce hair, but in fact that area has filled in!

If you would like, I would be happy to help you with information for some products that I have found helpful.  I don't sell them, but can direct you to where you can get them.

Hugs,

Carol

cinnamonrocket

Hi Carol

I am not completely bald. I do have some growth. About 1/10 of my hair came back. I have tried quite a few products throughout the years and different types of herbal vitamins. I  even tried rogaine for 6 mos but nothing seemed to work. I wear a wig most of the time, except when I am swimming, running or biking.

I am definitely open to any other suggestons  or help you may offer.

Cinnamon

carol1949

Cinnamon, I sent you a pm.

enjoylife

vinnsmoonrocket I have just ordered a specail vit from Hair essentials its guarnteed if you see no change you get every penny back google it I have been this way since May of 08 and I have male balding pattern and people look at me like I am still sick I would of dealt much better with no boob rebuilt than no hair try this and we have nothing to loose and I even emailed them and they gave me 10% off the price. good luck I will post this in a month if I see its helping to help all of you ladies...

kittycat

Trauma can definitely affect the hair.  My niece grew a single gray hair after my sister went through chemo and she is only 7 years old. 

carol1949

For those of you who are intersted in the products I have had good results from:
Check out Phyto products.

http://www.phyto-usa.com/index.asp

I have had very good results with these & as a hairstylist they are the best products I have ever worked with.  Unfortunately the Salon I am in now does not use them & I also have to pay retail!

I suggest the Phtyocyanne shampoo and tx.  The tx comes in the glass vials.  You should get about 3-4  tx per vial.  The shampoo is real watery, but very concentrated & lasts me almost a year.  I shampoo daily, but sometimes do alternate w/ another shampoo.

Use Phytopollein 3 x's a week for 1 month  (I put this on at night & sleep in it then shampoo it out in the am. 

2 x's a week for 1 month

1 x a week for 1 month & then one month off.

Same with the glass vials.

condition w/ Phytokerite', I like the vitamins, but you can use almost any good hair vitamin.

I really like all of their products.  You can get them from Sephora, Ulta and some upscale salons.

The progenium is a nice alternate shampoo that is rather new. 

Hope this helps anyone interested.

3jaysmom

ive just found this thread, and im 61; with MANY health issues, lots of different meds...

   so, here's my "hair" story... im almost 3 yrs out from taxotere, and the hair in the back has come in long, and pretty thick... BUT; the front is another story.. thim, with bald patches...

   im wondering, how long has it been, since you think this is permanent? im getting little follicles in different places, taking vits., and generic rogaine in the bald spots. i have my eyebrows, some of my lashes. i've not given up; just said, well, we'll see in a year more..

   im sorry for all of you who have gotten nothing back. its' a hard thing, to lose your breasts, then your hair, as i did. plays havoc with your self esteem, for sure! i just try to concentrate on what i do have, work on my inter personal relationships, and try to not feel too sorry about my hair. but, some days, im an old, fat 1/2 bald woman... somedays the glass is 1/2 full for me, some days, 1/2 empty, and some days i just say wth... and spill whats in it... thanks for listening....    3jays

lago

3jaysmom you say you have MANY health issues. There might be other medications that are not helping your hair issue. Have you looked into that?

enjoylife

Lago I also have the same problem as 3jaysmom and I have no health issues since my BC in 08 and never got my head of hair back so its the TAXOTORE and we are just warning ladies since we were never warned infact the company and doctors still dont listen to us and there are allot of silent ladies out there its a very serous problem to try and live our lifes and feel and look normal we need people to listen and understand. I cannot get over they have advertisment on tv if you took a acne meds you can sue a company and we cannot get anyone to listen. We have a lady amoung several in the UK who is actually meeting with the drug company and I am so proud of her they have done nothing but ignore my information I mailed them they figure if they dont do anything it will go away.... we have lost part of our lives and if you have the problem you need to be aggresive and try and get the word out. just trying to help the future BC cases ...

nikola

enjoylife, I understand you completely. Although my hair came back I am very upset for all the ladies that were not so lucky. I was never told about possibility of permanent hair loss after use of T/C. On the paper I got it was written temporarily hair loss and once Tx was finished hair was coming back. During my chemo I found here that could be permanent. I questioned my onc three months after last chemo (my hair was already coming back) and he said yes, it was possible. So, he knew about it and never mentioned it. He said 6-10% would have problems after T/C. To me that is a significant number.

I think they are afraid women would ask for different chemo if they were told up front about that possibility.

I know I was very upset while waiting for my hair to grow. I had 6-year-old boy at the time that I could not swim with, cuddle with him without thinking if he would take off my wig by accident.

lago

enjoylife I'm not doubting that people have not had their hair come back on taxotere but I know there can be many reason why it may not. I just want to make sure she rules all other issues out. I mean if it was from one of her other meds and changing to a different med would solve her problem would that be great. 

BTW the acne drug on TV they discuss is Accutane. I  had very bad acne at one time. I had to have 3 courses of the drug over a 10 year period. My hairline receded a little and I have rosacea but these conditions happened 9-10 years after my last does of Accutane. My mom also had her hairline recede in her 40s and also had her first bought of rosacea about the same time I did. So eventhough these are common SE with Accutane I don't believe in my case the drug didn't caused it. That's why I think we need to be careful to rule everything else out before blaming it on the drug.

BTW I was scared that I was going to be one of those people who's hair didn't come back or came back very thin. I can't really know how those of you who are suffering feel but I do understand the scare. Thing is cancer scared me more. I know easy for me to say because I got my hair back but cancer really does scare me more than hair loss.

Taxotere screwed up my nails (toes and fingers) very badly. My podiatrist already told me one of my toenails will be bumpy now. Not so sure the rest of my nails will ever look like they did before. Toenails are still crap. Fingernails do have some promise. Still have some neuropathy in my foot/heel. Taxotere can be very evil but I still have no regrets because so far I'm NED.

hrf

I also have permanent hair loss from Taxotere. No one warned me. When I first complained that my hair was not coming back, my onc said it always comes back. Now she says she also has other patients also whose hair has not come back. I have some but it is very thin with bald spots. The hair I do have is "fried". Won't do anything This is harder than losing my breasts because it is so visible and as it is for many women, it is the finishing touch for how we look. Frankly, I'm devastated. Even my grandson who is only 6 keeps asking me what happened to my hair. Is there any hope?

LadyinBama

My onc said he'd never had a single case of someone whose hair didn't come back after Taxotere; but I'm so grateful for this site because I would not have known to ask if it hadn't been for this. My hair did come back, thank God. Like Iago, my fingernails are screwed up big time, but I hope they'll eventually regrow smoothly. Taxotere was the worst of the 4 drugs I did, so far as SEs; but I survived it.

kira1234

Well I will say my hair has finally come back. It has been 9 months, and I finally have an inch of hair over all of my head, but I only had 1 treatment. Now I would guess if I'd had all 4 treatments I would be bald. My nails are another thing. I have so many lumps and bumps still hoping they will grow in smooth, but not really expecting they will.