taxotere and permanent hair loss

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    Onehalf-maybe you could ask your onc to speak to AS and find out how many women this has happened to. You onc would get the true fugures.

    For a start theres me, theres okblessed so thats 2 and when my onc asked AS they said i was the 4th and after me okblessed so thats at LEAST 5 and i am sure there is many more.

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 

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  • moonwolf
    moonwolf Member Posts: 130
    edited January 2009

    All you guys who have had bad side effects from Taxotere, did you also get Neutropenia?  I've had Neutropenia twice with FEC and I hear Taxotere is known for lowering the white blood cells.  This worries me not only cos I don't wanna go in hospital again, but I have read that by having lower white cells a person is more likely to get secondary cancer. 

     I have been offered GCSF injections, but they apparently can cause Leukemia!

     It's all very off putting.  I may not even have the cancer still.  All this treatment for me is 'just in case'.

     I have 2 days to decide what to do :(

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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

    Hello Moonwolf - I took Neulasta injections every time I had chemo so my blood counts have always been 'high' normal.  My oncologist was always amazed at how strong I remained and healthy despite the extreme effects on my skin, hair and nails.  I took nothing but my normal vitamins, and flax oil.

     Honestly I can say that the only negative side effect I have had is the baldness [and weigh gain]. As I read through this forum I sense that a lot of people do not either 'believe' or 'understand' the devastation of permanent hair loss; and, that oncologists do not document it.

    My name is Pamela Kirby

    My oncologist, Jess Armor

    Mercy Health Center

    Oklahoma City OK

    can validate the permanent hair loss in my situation.  The dermatologist he sent to me is Dr, Grah also at Mercy --- I am coming up on two years since chemo ended and I do not have enough hair to cover my scalp, it is very 'fuzzy' like fine new born baby hair and does not appear to be changing.

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

     My bloods stayed fine throughout my taxatere treatment, i didnt have any help with the bloods and didnt miss any sessions. I dont think everyone has problems with their blood so dont worry about that.

    As Pam says, i am now 3 years post chemo and still hardly any hair - you can see my scalp all over my head and doesnt look like any change will happen now.

    I am fighting the company AS for compensation - just to buy me wigs and pay for scalp treatment.

    My biggest moan is how this side effect PERMANANT BALDNESS does happen with this drug and that there seems to be a cover up by all concerned. 

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  • paras
    paras Member Posts: 63
    edited January 2009

    dear pheode,

     I am so happy to hear a positive note. i haveto have 4 rounds of tc i am going to have my last onjan 10,2008 i was told it would grow back also. i hope so i use to be knowN as the girl with the hair. my insurance did not cover wigs i bought one . but i also called the yme organization and explained my situation they sent me an old womens grayish brown curly hair short wig that was appropate for a 80 yr old women i am a young lookinmg 52 year. who use to have long brown chesnut hair and the thickest you have ever seen. now it is gone. I WAS STILL THANKFUL THOUGH i know i would rather be alive but i would like it to grow back. hope that mine will grow  back next year. i do not expect miracles but by next year the chemo should be out of my system and the new hair growth will hopefully regenerate.i hope this is only true in those susceptible to alopecia which can happen to a few girls but i would think is rare however my little stubble's that are visible are gray to my dismay but i guess when i am healthy and they grow back i can dye them. hope this is not a true SE. by the way i had not had any bad SE except the dry cotton mouth taste that only lasted a few days and the nails and toes are fine. but the hair went on day 14 when we were on vacation. hoe others do not worry about the se THEY SEEM TO BE DIFFERENT FOR EVERYONE I HAVE ONE MORE CHEMO TO GO HOPE I WILL DO FINE AND PRAY FOR ALL OF YOU THANKS FOR THE UPBEAT RESPONCE. Kiss

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  • paras
    paras Member Posts: 63
    edited January 2009

    MONWOLF NO NO NO TAXATERE WENT FINE I HAD THREE TREATMENTS only the first was difficult and than the retreated me with certain pre drugs. i get aloxi in the miX and decadron i also get benedril and than they give me taxatere and than i get cytOxin.  i have read that the taxol has more se and is nOT as well tolerated as the taxatere . myself i had no real bad side effects that i could not handle no toes problem no nails problems no breathing peroblems only hair loss in day 14 i also was given an injection of nueLasta after every chemo which i had a minor side effect one day back pain and that it was gone. i hope for you the same is still have one more treatment and i expect it to go well.  however i DID have an initial reaction on the first Day THEY FIXED ME UP WITH THE DECADRON AND THE BENEDRIL AND I WAS FINE. YOUR TASTE BUDS ARE NOT THE SAME FOR ABOUT FOUR DAYS AFTER THAN EVERYTHING TURNED BACK TO NORMAL AND I COULD ENJOY FOOD AGAIN I NEVER HAD TO USE ANY ANTI SICKNESS DRUGS BECAUSE THE ALOXI IN THE MIX FOR INJECTION DID THE JOB IT WORKS FOR FIVE DAYS NOT SICK TO MY STOMACH AT ALL.DRINK WATER ALL THE TIME THOUGH BRING A BOTTLE OF WATER EVERYWHERE YOU GO EVEN TO BED AND STOP IN THE NIGHT AND DRINK SOME. GOOD LUCK TO YOU DO NOT BE SCARED IT WILL GO BY QUICKLY AND HOPEFULLY ARE HAIR WILL GROW BACK.

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 

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  • FrequentFlyer
    FrequentFlyer Member Posts: 15
    edited January 2009

    Hello! Luckily my hair did grow back but it's growing at the pace of a snail: about 2 inches since I had my last chemo a little over 12 months ago. I don't mind having less hairy legs and armpits than before but I do mind having rather sparce eyebrows and eyelashes and having to wait years before I can have something like a hairstyle again.



    And this is not about being vain and chosing hair over life. It's about not being told the truth by pharma companies which are making millions of dollars by convincing our oncs that their drugs are the best choice for us.

    It's about not being given a choice to select another drug (taxol?) because this company is too greedy and keeps known side effects a secret.

    It's about respecting the patient and not just seeing her as a cash cow.

    It's about giving the patient the option to say 'ok, I'm willing to take that risk' before starting chemo or when deciding which chemo to take.

    So kudos to Pam for trying to warn other women (and men).

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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

    Hi FrequentFlyer - Thank you for understanding.  If we can do nothing more than force some research for 'how to get our hair back' I will be pleased. We are not like people with aplopecia - we do get some hair back which at this point only makes my wig slip around on my head :-).

    I do think it will take us somehow creating a website so that we have a collection of pictures for documentation and then ask to link to every breast cancer website and every breast cancer drug site that will allow us to link.  Not only do we have to fight the battle for our health everyday, fight recurrence, we have this issue also.  If it weren't for missing my family so much I would move to an island where i could live out my life 'wigless'.  I know there is some vanity here but we live in a world where loss of hair for men is devastating - for women there is no word for it.

    You are correct - cancer is BIG business and just like some other BIG business phemonena [ie gasoline fluctuating prices] unless we plant our feet and demand answers we will be lost and forgotten.  I think of all the children that must be gong through this and how much harder it is for them to be different.

    Anyone willing to help start a website?

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

     I think my letter is being sent to SA this week so i will be very excited to see thier reply. Thats if i get one. The last letter i wrote to them asking for exact figures of how many hairless women have been reported to them by their oncs. I sent it recordered and i recieved NO reply. I can only assume from this that is a figure they didnt want to shout from the roof tops.

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 

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  • paras
    paras Member Posts: 63
    edited January 2009

    DEAR MOONWOLF PLEASE DO NOT BE DISCOURAGED. I AM GOING TO HAVE MY LAST TAXATERE AND CYTOXIN next week. i have had a nuelasta shot after each chemo and the doctor gave me decadron and aloxi before the chemo through iv , i also had to take dexamethasone tablets the day before chemo and the day of chemo.  i drank loads of water always carried a bottle of water with me even took one to bed i had no side effects except five days after nuelasta shot a pain in the back that went away after i took a pain med.  everyone is different. i think the water is an important factor though you want this drug to do its job and get out as soon as possible.  my nails and toes are fine i did lose my hair but i still have peach fuzz. the hair went on the 14 day after first chemo.  i got a wig a couple of them .  go buy a wig so when it happens you'll be prepared. and i hope your chemo will go smoothly and be over with fast. you'll feel better knowing you did all yoou can to be cured.don't be afriad i will pray for you tonight my friend. oh the only real jproblem which was not such a big deal is i coulod not sleep for acouple days after the chemo because of the decadron . no biggie and the taste factor which was like cotton ball but that went away on the 5 day and i got my taste buds back.  i did not throw up or feel sick to my stomach. probally the great concoction that my onco dr put together for me he really did a great job.

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 

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  • angie14
    angie14 Member Posts: 3
    edited January 2009

    Hi I'm in the UK. My last Taxotere was 31st July 2008. My hair has only just started growing - the sides are actually growing much quicker than the top and back and mine is coming in pure white. Hang on in there. You'll make it soon for sure.

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

     Thats how mine started, i have more around the sides and back but almost nothing on the top and front.

    I am sure yours will return but sadly for me and some others it wont. Angie, when you say hang on it will come back for sure, not sure who thats for? not for me anyway.

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 

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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

    Hi Shirley!

    I have emailed you several times but have not heard back from you. Hope you are doing well - it is about 20 below here so wearing a wig is not such a bad thing for the moment. And, the sun is shining!

    Blessings,

    Pam

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    Hi Pam, oh i am so sorry! i thought i had emailed you back but i must be going senile too.

    I am fine thanks but busy sinse Xmas as my daughter has come home so i am soooo happy that she is back. I have also been away for afew days.

    We have had freezing weather but its a bit warmer now.

    My campagn manager is getting his girlfreind (she is French) to translate the letter we have put together. We did just want it translated but for the person to really understand what we mean, if you understand that.

    When (IF) i get a response from Sanofi Aventis i will post it on here for all to read! That should be interesting but the last time i wrote asking for exact figures on how many women have been left bald they wouldnt answer me and i sent the letter registered too! so me thinks they have stuff to hide or they wouldnt mind telling me would they! We shall see.

    How are you getting on?

    shirl X 

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 

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