taxotere and permanent hair loss

shirleyl

Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

We need to do something 

shirleyl

I have now posted my letter to SA and have given them till March 7th to reply.

So we shall see....................

I will post their reply on here when i get one, if you want a copy of what i have sent i can email it to you.

shirleyl

Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

We need to do something 

shirleyl

Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

We need to do something 

carol1949

I know that we have attorneys on this site.  Let's get them to put in their opinion and see if you can get pro bono help from someone.

Meanwhile, Shirley, I am a long time hairstylist and have had thin hair for years due to thyroid issues and Synthroid.  However, I have had wonderful experience with Phytologee's products for thinning hair for women.  There is a vitamin supplement that has a lot of brewers Yeast in it, there is a vasodilator called Phytopolein that you can feel stimulating your scalp, a shampoo and a strengthener for the hair... It is worth looking it up on the internet and at least reading about it.  You can buy it through the internet, in some upscale salons, and also from Sephora.  People who knew me for years coudn't beleive how good my hair looked when I was using it.  I, too had taxotere, but so far my hair is growing back.

I would also encourage you to look at all kinds of holistic sites regarding the immune system, as it is all interconnected.  The Phto, is definitely worth a try.  It is far better than Nioxin, as it is all plant based, not chemicals.

Bec

I am new here and will be receiving my third treatment of Taxotere in a week or so. 

I was diagnosed w/stage four, triple negative breast cancer in early Dec 08.  It had spread to my brain and spine, but a recent MRI (after 11 radiation treatments) has shown no cancer there for the time being.  Fingers crossed ....

It's been a scary and strange journey thus far.  The masses of information and what I don't hear from my Docs is very overwhelming ...

I don't want to loose my hair forever.  I want to believe that I can fight and win this.  I'm watching this post closely and wish I could say I was surprised. 

Nice to meet you all and keep up the fight!

Bec

crazy4carrots

Dear Bec:  You've been through so much in such a short time, but it's wonderful to hear that you are cancer-clear.  Taxotere is tough -- too tough on Shirley and the few others whose hair has not returned.  But the chances of that happening to you are very remote indeed.  We all wish there were guarantees -- both for hair returning, and for cancer NOT returning.  Meanwhile, the best we can do is be "cautiously optimistic" and carry on -- with the strength we never knew we had.

And, we keep fingers crossed for each other too.  Wishing you well,

Linda

shirleyl

Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

We need to do something 

carol1949

Ladies.  There is so much more we can do than be "cautiously optimistic"!!!!

I have a friend who is 11 years cancer free who did it with surgery and then went totally holistic!

Please respect the medical, but don't neglect the supplemental and complimentary therapies that can make a difference. 

As a hairstylist, I have always said, "In the big picture of life... it is JUST hair!"

Do look into the Phyto products.  They sure worked for me!  and I don't sell them!! lol

okblessed

Hello Carol - I know it is just hair  AND I REALLY WANT SOME!!! :-)

I looked up the Phyto products but there were soooo many. Which do we need?

Ladies - I go for my first six month check-up tomorrow so am believing that I will be cancer-free.  Thats what we all need to focus on - being cancer-free, leading a healthy lifestyle, remaining healthy for the rest of our long lives --- here's to beautiful healthy women - hair or not!

I truly appreciate everyone's support.

Okblessed

shirleyl

 The thing is Carole

'ITS NOT JUST HAIR' , its our hair that make us who we are, makes us feel feminin, makes us feel sexy etc etc. With out hair these things dont exhist - well not for me they dont.

For everyone thats had their hair return is very easy to say to us that its not a big deal. Trust me it is a massive deal when you are caryying on with your normal day to day life. 

I will wait till i had a reply from SA, hopefully this week before i try anything else. 

shirleyl

Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

We need to do something 

carol1949

okblessed.  You can actually look specifically for the info on thining hair for women... but I will tell you what I use and have great results with.

I use the phytopolien which is a vasodilator.  I use that 3x's a week for 3 weeks and then 1 week off

It is a little stinky and I put it on at night and sleep w/ it on then shampoo it out in the morning.

I take the vitamins

I use the phtocyane shampoo which is for thinning hair for women (men have a different formula)

And I use the phytocyan glass vial.  I get about 3 tx's per vial I use it 3 x's per week for 3 weeks and then 1 week off.

Shirley, I am not trying to be flippant.  I lost 2 brothers to cancer 6 months a part... I lost my Mother in law to pancreatic cancer.  Hair?  Yes, it is nice, but life is so much more precious and I have been through so much more than hair loss!  For me... I don't care if I am sexy or not!  It is just hair!  I would give my hair permanently to have my loved ones here with me.

Shirley, do you have any thyroid issues or blood pressure problems?  Blood pressure and thyroid meds are horrible on the hair.  I can tell just by touching a person's hair if they are on blood pressure medicine.  Try the Phyto products.  You have nothing to lose.

okblessed

Thank you Carol.  I am going to try the products.  I visited with a new oncologist today - my blood tests are clean - yeah! Praise God!

The oncologist did say that my body still appears toxic from taxotere - she has scheduled a PET Scan for two weeks from now to see just what is going on and if perhaps my thyroid is part of the problem for my skin and hair.  Even though I have never had a thyroid condition previously, the chemo could have changed that.

We are all glad to be alive - Shirley, Silke and I just would really like to have our health and our hair - just that 'girl' thing I guess. Hard to believe that there are only 3 or 4 of us around the world with little or no hair return.  Means that most of you have absolutely nothing to be concerned about except relaxing and getting well!

Update on my bald head: It does appear that the soft white 'down' hair is falling out and some dark [maybe 'real' hair is beginning to replace it].  I have that HOPE THING again :-)  I remember the day I stood in the park and ran my fingers through my hair and it blew away in the wind like a dandelion --- well, this was something like that again - only this time it made me smile.

Here's to a healthy,, happy tomorrow!

shirleyl

 I never said its important when you have cancer its the least of your worries, and for people with secondaries you wouldnt give your hair a second thought i am sure. As i said i was glad to get rid of mine when on chemo.

BUT when you dont have secondaries (as far as i know anyway) and am feeling good and healthy and getting (trying) on with my normal life then it is a big problem!. Everytime i look in the mirror i see 'chemo face' which i will repeat again - if you have chemo/cancer ok fair enough, if you dont you dont want to see chemo face do you?????  and all the other hassles it brings which i cant be bothered to type about. AND thats nothing compared to the financial burden its put on myself an hubby - at 50 euros per month for the rest of my life to keep replacing my wigs i would say thats something to jumo up and down about!  

You dont seem to grasp what i am complaining about. You just compare my thoughts to people who are suffering cancer etc but not looking outside the box. 

crazy4carrots

Yes Shirley, I agree with you about looking in the mirror when bald and being reminded -- yes, I have cancer.  More than any of the other side effects -- most of which are relatively fleeting -- baldness is the constant reminder.  My hair came in very slowly and is stilll very short -- and sparse, and even though I have hair now, looking in the mirror every day just makes it more difficult to move on to a "normal" life.

I truly feel for you and do feel that the makers of Tax should take more responsibility for this most devastating of side effects.

Linda

shirleyl

Thank you Linda for your understanding.

Carol, as for feeling sexy and feminine - it matters big time to me as i am only just turned 50 !  i suppose if i was 70 i wouldnt care but being a young 50 its important in my life. You have to move on with your life and cant just carry on being permanantly grateful while putting up with loads of crap that we shouldnt have to. These drug companys make millions because of our cancers and if they choose to 'hush things up' then will have to buy my 'hushness' because i am now severly out of pocket because of their LIES.

I was told my hair would grow back - well 3 years on it hasnt and i want financial help from SA and i wont stop till i get it. 

okblessed

YEAH SHIRLEY!

YOU GO GIRL!!!

I believe I am the one who started this topic and it was meant to identify and build a group of women who have permanent hairloss from taxotere.  I appreciate everyone's thoughts and support but we as a 'group' [that hopefully remains small] have every right to defend our 'rights' to honesty and full disclosure of side effects in treatment.

This company KNEW at least 7 years prior to my treatment that permanent hairloss was a possibility but chose not to disclose until forced to.

Now, we have every right to FORCE them to be held accountable.

carol1949

Hugs Shirley.  I don't mean to sound insensitve to you at all... Sometimes, I get a bit flippant and I apologize.

I do agree and put out a plee for help from "this board" for a legal rep to step forward and offer services or at least advice.

I do also wonder though, did you say you have thyroid issues and/or blood pressure that you are on medication for?

Where do you live?  Are you in England?  I noticed Euro's.

When I did the initial research, I read where some people suffered permanent hair loss from the taxotere...  Quite frankly if I ever get cancer again... I will go totally holistic!  My opinion as I do think the drug companies are corrupt!  We will never see a cure for cancer as there is too much money to be made in treatment.  Sad , but I am afrraid it is true.

Don't give up for trying to regrow hair though.

shirleyl

Its ok Carol, just that i get really peeved that people go on and on about the fact that they will loose their hair to chemo but i would love to know what their reaction would be at the same time being told it would never return! they would be hysterical (so would i have been) so its no different to how we feel after the event. Ifact we feel worse because we were told it would return and had no reason to think other wise.

No, i have no thyroid and BP problems.  I live in Franc, hence the euors :-)

shirleyl

Thought you might like to see a pic of my lovely thick lusious locks

shirleyl

Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

We need to do something 

shirleyl

Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

We need to do something 

carol1949

shirleyl, Have you heard of the Phytologee products?  They are from France.

I have had very good luck with them, and though your hair is extrmely thin.... I see peach fuzz and you would be surprised at how it may be possible to make that hair strong enough to be a little more abundant than it is.

It is worth a try, and since you are in France, it shouldn't cost that much because here in the US, we have the shipping costs added.

You can look it up on line.  I beleive the developers of it are a Dr. or Mr. Ales (sp?)

Those hair follicles may be able to be rejuvenated.  My hair was extremely thin and if you notice in the photo of me and my friends, (I am the one with the black hair).... that photo was taken prior to my bc dx, but it was thicker than it had been in 30 years.... no exaggeration!  My friends even told me I didn't need to wear a integration piece to my reunion... which I had been previously wearing.

Many hugs and again, I apologize for any hurt feelings.  That certainly is NEVER my intention.

When any one of us hurt, we all hurt!

Regards, and let me know if you try the phyto products for thin hair for women.

http://www.phyto-usa.com/ 

shirleyl

Carol, as it happens i am going to one of their stockists tomorrow so i will pop in and see what they have and of course the price - nothing here is cheap by the way ! :-)

Its abit decieving because my hair isnt actually peach fuzz its quiet strong normal hair and if i go outside you can still see my scalp all over so not the perfect picture for reality.

I will let you know after i get back from the shops tomorrow.

You didnt hurt my feelings, i just get fustrated because most people dont seem to grasp what i trying to put across - the point of my rantings! Thanks for your help and will let you know.

SX 

paras

dear shirleyl, i am so sorry this happened to you thank-you for sharing it with us.this should be reported to the drug company as an adverse side effect.

shirleyl

Paras - dont worry this was reported to the drugs company ! They certainly know about me thats for sure.

Carol - i went into the pharmacy but when i asked for the products she said they didnt have any and tried to sell me some other stuff- tres cher ! But i will go to my local one on monday as i think they will be able to sorder me it.  

ipohgirl

dear Ladies,

Been following your postings since i was diagnosed earlier this year. I empathise with all those who shared their feelings of  loss and anger with the drug companies. How about a class action, girls? The bloody companies- should disclose to all those who are going to start on Taxotere know about the end results, permanent changes that are irreversible.

My BS will introduce an oncologist this Friday to discuss treatment. Don't know my ER. PR and HER status yet. Had lumpectomy for two tumours (2.4 and 1.4), but thankfully, nodes were all negative and margins clear.

My bs said i was a marginal candidte for chemo, but she would prefer that i do it for added insurance. RT will be scheduled nonetheless.

My question is : what is taxotere for? Is it for the triple negative cases or a last line drug?

Also, where can I get the frozen gel caps for my hair? I am in Hong Kong, but would be able to ask someone from the US or UK to send it over to me.

Thanks a lot.

Hugs,

Ipohgirl 

shirleyl

Yes, ipohgirl, even if it had happened to just one person we should be told. It has happened to more than that though! The class action is one were are inverstigating, i am waiting for a lawers firm to get back to me because i live in France and the others are in different countries so awaiting their answer.

Taxotere is (was) the latest chemo drug and works in an entirley different way to other chemo drugs.

They had results that people that have it after 3 X FEC are are less risk of recurrence or secondaries than people that have 6 X fec.

I have started a blog

 http://taxoterehairloss.blogspot.com

I only created it yesterday so still lots more info to go on plus a 'before' photo to go on to.

I was told the gel caps dont work very well if at all with taxotere.

Good luck and i am sure you will get lots of support here.

crazy4carrots

ipohgirl:  I think your best bet would be to contact someone in the U.K. for a gel/cold cap.  They aren't used in Canada or the U.S. (or else very rarely).  However, I know they have "saved" the hair of some in the U.K. (well, at least there are women who they think would have ordinarily lost their hair, but didn't).  I would also advocate the use of ice mittens or ice socks, because taxotere can wreak havoc on your nails.  I had my tx in the summer with the air conditioning going full blast.  I wore sandals and my feet were always cold.  Didn't have any toenail problems, but did lose both thumbnails, and all my fingernails are still quite brittle (even though I've been taking lots of biotin).  Just my story, however.

Of course, you do have to watch out for frostbite!  Good luck.

Linda