taxotere and permanent hair loss

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  • moonwolf
    moonwolf Member Posts: 130
    edited January 2009

    Thanks for your encouragement.  I went into receive Taxotere terrified, but have to say that not had any problems so far!!!  With FEC I just crashed in the chair for first 4 days, but did not even feel like I'd had Taxotere.  Only a night of flushes on 3rd night and a little indigestion on 4th day.  No sickness or aching.  Oh! - constipated 2 days and trapped wind yesterday, but Senna dealt with that.  So am delighted with that.  Now fingers crossed I don't get neutropenia!  I had a strong dose GCSF to avoid that.  No more hair fallen out yet.  I am taking Glutamine to try to prevent Neuropathy.

    What are decadron and aloxi for paros?

    Good luck with setting up the website.  My Oncologist did not have experience of permanent hair loss.  You have been really unlucky.  How does it feel not having eye lashes?

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  • Onehalf
    Onehalf Member Posts: 171
    edited January 2009

    Moonwolf-

    I was on Taxotere and Cytoxan for four treatments, I just finished my last treatment and am getting ready to do 30 treatments of Radiation.

    My Chemo treatment was very esay (let me brag..LOL!)

    The side effects were like clock work through my whole treatment....which was nice I'm a Virgo and I like to organize and balance....so my side effects fit my personality.

    THe side effects were not difficult at all....I was able to continue with work, not losing much time of work.

    Decadron is a anti-nausea medication....I had to take it for three days starting a day before my Chemo day.....I never did suffer from nausea, but I also took their meds as suggested.

    If you would like to hear more about my side effects experiences I would be happy to share with you.

    There are some over the counter meds you should keep on hand at home so youy are not finding yourself needing something in the middle of the night.

     Best to you,

    Denise/Onehalf

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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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  • EGAL
    EGAL Member Posts: 539
    edited January 2009

     Decadron is a steroid, usually given in pre-meds to ward off any reactions.  It is not an anti-nausea med.  It will make you wired and can't sleep much.

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  • Alo123
    Alo123 Member Posts: 308
    edited January 2009

    I am starting 4 doses of taxotere and cytoxin on Wed.....I am now very scared after ready your post.....I am doing this to lower my recurrence by a few points...not many....after reading your posts Ia m wondering if it's worth it if I have to live bald?

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  • Onehalf
    Onehalf Member Posts: 171
    edited January 2009

    Alo123-

    The numbers of permanent hair loss is in the few.....Talk to your Oncologist about your worries.

    Plus there is a a forum on her for gals who are just on Taxotere and Cytoxan. You might want to peek it may settle some of your worries.

    Egal- About Decadron, not being an anti-nausea pill. That is what I was told by my doctor and that is what the paper work says and the directions on the bottle says "for nausea".

    I'm sure there are other benifits for it. As far as keeping you awake...oh boy are you right. I had trouble the first two Chemos...I really felt it on the first time I took the medication.  I did have to learn how to taper off of the decadron (with dr. advice) so I did not feel the side effects from it so hard.

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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

    onehalf

    Yes, glad to hear your side effects and any tips re taxotere.  Have  had intermittent stabbing pains in liver area which worries me.  Also despite gargles of all sorts - mouth white and feels yuk - worried will get ulcers. 

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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

    okblessed - I was thinking - you had severe side effects but still stuck with the chemo when plenty would have given up. (me for one probably).  I wonder if that's why you have permanent baldness - because you stayed with the severe stuff.  I reckon others would have given up and that's why they don't have a permanent problem! 

    Did all you gals with permanent baldness have severe side effects? 

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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

    good morning moonwolf - you know, until you said this, i never thought about it but looking back through the sporadic journals that i kept --- i never thought about giving up.  this was just something that had to be done and i made the best possible choices that i thought i could make to get through it.  like i said earlier, my nails were what made me feel 'feminine and normal' and when they started popping off i momentarily panicked --- then went out and bought 30 boxes of bandaids and started 'bandaiding' my fingers :-)  I 'painted' nails on the fingers with no nails til they grew back [toes - big ones] took longest.

    i was a single mom for 25 years - guess that took 'giving up' out of my 'options'

    we can all do this - we can all get through it - we can all adapt and make the best of life --- enjoy the sunshine, cool breezes and soft rain on your bald head [okay maybe when no one else is looking] but we can do this.

    find the humor - i bought everyone shampoo and hair brushes for Christmas cause i haven't needed either for two years [see, using the humor!]

    find a baby -- they usually have about the same amount of hair as me and they are enjoying life to the fullest - hearing a baby laugh always makes me smile.

    have a wonderful day ladies!

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  • paras
    paras Member Posts: 63
    edited January 2009

    decadron helps with the side effects that can occur from a allergic reaction and aloxi is an anti nausia drug that works for five days straight . yes it is true you can not sleep for three days but you also avoid any adverse reactions.  I am sure your  has some kind of concoction made up for you while you are getting the chemo they usually give this to you iv before the chemo and also i had to pre med a day before and the night of chemo. due to initial bad reaction. i had my last chemo on monday the 19th jan 2009 and now i am done i will be starting femara soon which is a pill to block estrogen. i hope your chemo will go by fast as mine did without any serious side effects if we can get by with a couple of sleepless nights thats ok with me. i never got sick to my stomach or had bad nails or thrush or any of those things drink lots of water.

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

     My side effects from Taxotere were, bone achs, horrible mouth and everything tasting like sawdust (but mouth wash with bicarb in sorted that problem) i also lost all my finger nails even though they made me sit with hands in ice buckets while having chemo. I also lost a big toe nail. I had no sickness at all with tax, bad stomach with the poops a few times but this was better than the constipation with FEC. I cant think of anything else really.  Each one seemd to get abit easier and with the last i didnt even end up in bed - but i think it was because i was on such a high after having last chemo.lol

    Its my 3rd anniversary tomorrow of finishing chemo and thats 3 years now living with no hair. 

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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 sheril what other treatments have you had besides taxotere. did you have any other chemo tx. did you have any hormone treatments? did you have a regime of 4 taxotere treatments only jdi you have taxotere and cytoxin tc 4 times or was this a second chemo regime for you . i am wondering if you had the same treatments as the rest of us.

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  • paras
    paras Member Posts: 63
    edited January 2009

    alo123 its worth it to be bald the rest of your life if you can live my friend.

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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

    Paras of course we know its better to be bald and alive - nobody has said other wise.

    You are missing the point! 

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  • Alo123
    Alo123 Member Posts: 308
    edited January 2009

    I guess what I meant to say was ...was it worth it to do the chemo....not live....of course I want to live....my onc. gave me a choice on the chemo.....that is more of what I meant.....

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    Hi, i was just told this would be the best treatement, you will have 3xfec and 3x tax. Yes, i would loose all my hair but it would grow back bla bla bla. Six months after finishing tax my onc reported my hair problem toSanofi Avantis and they said "oh yes, sorry about that but it can´happen. My team had never seen this before but i suppose at the time Tax was a newish drug so the its used the more this will happen.

    Had i known this was going to happen i would have asked for another drug.

    Obviously if someone said live and be bald or have your hair grow back and die then theres nothing to think about.

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  • mumito
    mumito Member Posts: 4,562
    edited January 2009

    Shirleyl  looks like your another one of us that doesn't sleep much.  I am always online at rediculous hours as well.(Hugs)

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    I am in France so its normally lunch time for me! I sleep wonderful :-)

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  • paras
    paras Member Posts: 63
    edited January 2009

    sheril my question is how do you know it was the taxotere that caused the permanant baldness since you also had other treatments maybe it was the combination of the all the drugs. and i will be sad if my hair does not grow back i was known as the girl with the hair all my life until now. i had very long thick hair now i have none. i hope it will come back and i hope yours does too shiryl. the chemo nurses said tha tthis is very unusual they have worked with the tc regime for years and have never heard of this only in brain cancer where the patient was given rads to the area also.

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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

    Hi shirleyl - I finally got an oncology appointment for a week from Monday - it has been 6 months since I have had a check-up so I am bit anxious.  I also have an appointment with a dermatologist about my 'hairless head' :-)

    Actually I saw from friends that I have not seen in several months and they are amazed that my hair is starting to come in. I can tell a bit of a difference - it kinda looks like a cartoon of when someone sticks their finger in a electrical socket --- standing up all over the top about 1/2 inch high. Still small coverage at the very front but much different than last summer. I AM BELIEVING FOR HAIR FOR MY BIRTHDAY JULY 25TH!

    All I can attribute the change to is the minoxidil + retin A, massage and the vitamin e oil.  I am even getting eyebrows [I rub that stuff there also]. It is almost two years since treatment ended but these last 3-4 months my hair really has changed.  I am a loooong way from being able to go without a wig but I actually believe there is some hope. 

    Lots of snow and ice here in Oklahoma so wig is actually kinda nice and warm!

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

     Para, after my first 3 sessions i lost most of my hair but kept some around the ears sides and back. When i started Tax it all came out but after the 2nd it started to return - i was very excited and showed my onc. He said dont get too excited because after your last one it will all come out - everybit. I didnt believe him but it did and that was it - never to return, so it seems it was the 3rd tax that finnaly did it. My onc also knew it was the tax (he said he has never seen it happen before) so he phoned them and reported it and they say 'yes - it can and does happen' i even have a letter from them saying that it does happen, and onc says sinse he has reported my case, 3 years ago, more and more cases around the world are also being reported.

    When Tax is used on prostate pateints, permanant baldness with tax happens in a good third of users. 

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  • shirleyl
    shirleyl Member Posts: 167
    edited February 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 February 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 February 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 February 2009

     I am very sorry ladies about this repeated post of mine reapearing every day!

    I have emailed this site 4 times and told them about this malfunction but i recieve no reply or action from them. I can only assume this site is not moderated!

    I have tried to register using a different email address but for some reason it wont let me.Bizare 

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