Still BALD Two Years After Taxotere

Carole, i cant say as i know how you feel because i dont. When i had my tax 3 1/2 years ago i was told me hair would grow back and i wasnt informed of any other possbile damage long term. But had i been told i dont know what i would have done. What i do know is that if i had been told that my hair definatly wouldnt have grown back then i would NEVER have had Taxotere. there are plenty of other drugs. If i had known the full scale of problems and stats which everyopne seems to keep close to their chest or deny they exist then i dought very much if i would have had it. But this is why its all kept hushed up and not talked about.
i wasnt told about the nails either, i lost all of mine plus a big toe (well hidden and dark)so no sunlight getting to that! its not as bad as it sounds but paying in shops when i have micro pore tape on all my fingers plus no hair i look like a lepher and sales staff used to put the change on the counter top because they didnt want contact with me!
I know when you have secondaries these all must sound so pathetic and they would love to have our problems without secondaries , but for us that so far are on our primary Dx trying to get on with our lives these have a massive impact on wether we can do this or not!
I certainly dont want to sound blaze etc or offend anyone but i will do everything i can to annoy whoever till we all the facts/possilities given to us so we can choose wether or not to take the risk.

As an ex-nurse, one of the things we were BRAINWASHED with was to treat the patient bio-pysch-social fashion…ie, the whole person and not the condition. I don’t think many doctors have been told of this approach! My experience is that if I complain about my spine to Oncologist, he tells me it’s not his field or his problem; the spine man says chemo is not his field, pain amanagement say it’s not Their field, etc etc!
I think we are really just 2nd generation guinea pigs with some of the new regimes. When you think that a lot of the old chemos have been around since 2nd World War, and they know just what to expect long-term.
But I guess they are just trying to do their best by us, so I don’t want to sound too angry.
By the way, the old dark nail polish trick did work for me, and still does. If I don’t wear it for a while, my nails really complain!!
Best wishes, Jax

Thanks for you replies I am just so confused about everthing right now. I was just saying to my husband, you go into ons room they tell you what drugs you will be having and for how long and really you just accept it because at that time you think it’s the right thing to do and that you would be stupid not to accept it. Now I find myself wanting to know all about these drugs before I have anymore. But I am seeing my onc on Monday and will be asking a lot of questions but I know what will happen, he will bamboozle me with all this technical jargon and tell me it’s the best thing for me.
xxxxxxx

Then they need to be told that they are not doing their best if they keep fects from us that might stop us (or at least question)from having certain drugs!
So, has your onc told you its not because of the chemo?
I agree with you that we are guinea pigs to these new drugs.
There should be some structure in place to help people with permanent side effects no matter what they are.

He has just basically said that “they” have decided what is the best treatment for me and the fact that they say because of my age that want to give me the best possible chance,I’m not going to lie, I have having serious thoughts as to whether to carry on, part of me feels stupid for even thinking this way but the other part is saying why put yourself through all this, If I continue, yes, I am possibly preventing it, but it could still come back and if I stop am I without sounding morbid, signing my life away

I have had afew women email me saying that their hair hasnt reutrned after tax but now the cancer has come back they obvioulsy have other things to think about. Its not a wonder drug and if we only have our oncs advice to go on what else can we do?
If you go a head with Taxotere hopefully your cancer wont come back and you will escape from permanent hairloss, bone problems etc etc and you can concentrate on getting on with your life.
Thats why sites like this are so vital to us, so we can learn for ourselves what our oncs dont want us to know.
I suppose alittle knowledge is dangerous as the saying goes.

Thanks for your comments, I’ll just wait and see whta happens Monday

hi there

i had 3 fec and 3 tax finishing in dec 08. Hair is growing back tho slow and had first veryy small trim on sat so very sorry to hear about your hair not growing back. I also wasnt told of all the side effects of the drugs i was being given. I lost my toe nails and fingernails peeled off. Although fingrnails have grown back they are very weak and continue to peel and break. My toe nails or should i say the lack of them is a different story. No sign of them coming back and toes still have a numbness that they say can take up to 2 years to resolce if at all. I also seem to have a lot of joint pain and take voltarol and gabapentine daily and occassionally tramadol as well. God knows how long this pain will last. My point is that i agree that we are not given enough information on what they are pumping into us.

Gail xx

I finished tax Nov 08. I still do not have a full head of hair. My husband has just given it a light trim. Mainly until and if it ever all gets the same length. Others I have met who had FEC it seemed to grow back pretty quick. Mine started to grow back at end of FEC and then fell out again when I started tax. I am seriously considering not bothering to grow hair again. I quite like the wigs. Less expense and less bother. Has anyone else done this I wonder.
As to nails my toenails are still there but I am having a chiropodist every 6 weeks. She says they are loose. This is over 6 months later.
Also finger nails half came off about 3 weeks ago. A new nail grew under the old one and pushed the old one off. Also I had to wear plasters on nails for about 3/4 weeks as they split but not right across and I was afraid of catching them as they were still attached to nail bed.
BCNS and oncs as far as I can see gloss over all the side effects and risks. The same for lymphoedema. I think they are worried that if they told people the realy likelihood of side effects more women would refuse the treatment.

Maybe you could take the time to vote on my poll on my blog
taxoterehairloss.blogspot.com/
thanks ladies

well ladies I have just finished fec and start tax just 6th May. I did speak to my onc about my concerns and just as I thought I was told it is a small minority and that I would be fine. I really don’t understand how they can just come to that conclusion. I still don’t know what to do for the best, as I said before al the other side effects I am coping with really well but the thought of possibly losing my nails really scares me I am going on Holiday in August and don’t really want to cover up my fingers and toes with plasters. I don’t usually sound so vain but I just can’t help it this time .

Carole xxxx

P.s is there anyone out there who hasn’t lost their nails

Carole

I think some hospitals provide iced mittens and socks - which would work similarly to the cold cap on the head. I’ve used the latter and it has been quite effective so far re hair loss - so you could ask about the mittens.

Bright

I really agree with what Starfish says. I had my last Chemo in Dec. and my hair is still like that of a baby - but much less attractive! I don’t envisage being able to wear it “out” for at least 2 more months. Like Starfish I have got on well with my wig and may well continue to wear one -it is definitely easier than having to do one’s own hair - especially if it is like mine, wavey and wild. I have had a lot of compliments on my nice hair doo from folk who didn’t know it was a wig. (Maybe it’s my age but I never thought going bald was an option- I didn’t want either sympathy or ‘aren’t you brave’ looks for having chemotherapy - which is the inevitable reaction if you have a bald head.)

Re the nails- mine have are still hideous - some growing new under the old ones, some lost - one became infected and resulted in cellulitis in my ‘bad arm’ as a result. The possible side effects of all my treatments was explained to me at each stage but they were certainly not dwelt on. I guess the oncs know that most people will accept initial treatment whatever the potential side effects- it is only later when we are not so shell- shocked that we begin to question - and particularly if we get unhelpful comments from BCNs etc.

When i had my Taxotere they didnt have the mittens but i had to keep my fingers in buckets of ice. It didnt do much good as i still lost every nail. Every night in the bath i usewd to remove that days grubby looking micro pore tape from each nail. When they were detached the nail would come off with the tape. I used to leave the nail on the side of the bath knowing my daughter was next in for one. I used to think it was so funny hearing her scream as she saw it or put her hand on it lol

A lady down the road from me had Taxotere afew months ago and she has lost all hers too. I think you are lucky if you dont loose them.

I’ve just found this thread again and thought I would come back to say that now, after finishing Tax in October, some of my nails look bruised, like I’ve banged them, and are so so painful. They’re not black, yet, but does this sound like what happens to the nails?

They’ve been splitting and very fragile for about 3 months, but this bruised and painful stage has only started this week - 6 months after finishing tax!

Hair, well I have a covering but no eyebrows and very short eyelashes still.

Hi Carole,

It’s about 16 months since I finished chemo 4 each of FEC and Taxotere.

I lost my hair on FEC but it started to return on Taxotere and it carried on growing throughout. However I did lose my eyebrows and lashes on Tax. My fingernails went a whitish colour, and my fingertips were sore, but I didn’t lose any of the nails. I did lose my two big toenails, but not until new ones had started to grown underneath, so it was no big deal.

Everbody has their own experience and it seems I was fortunate in the hair and nail department. I hope you are too.

I will say, though, that Tax really knocked the stuffing out of me, and it took me some months to get over the exhaustion.

Good luck!

xxx

Hi Carole,

I’m also a few months down the line from finishing Taxotere, in mid December last year. I haven’t lost any nails yet (touch wood), although I did use the frozen mittens (but found them painful, so be warned!), and still wear dark nail polish all the time.

My hair started growing back whilst still on taxotere, although very wispily, and seemed to shed from time to time. It only really started growing better once I’d finished, but was still very uneven, so once I had signs of hair all over I shaved it all off to let it start again. Felt quite a drastic thing to do at the time, but am very pleased with the result - I have 3 months growth now and haven’t worn my wig at all for the past month.

I find it hard to comment on the fatigue side of things, as I’ve had a mastectomy and radiotherapy and started tamoxifen, all since taxotere. I do get tired, but it could be any or all of these things!

I still have sensitive fingertips and sore feet, but I gather that these symptoms can take quite a while to resolve.

Best wishes,
Julie

oh dear! just come accross this thread. something else to add to my misery. i am reluctantly coping with wig and praying hair will return but it is the thought that my of eyelashes not coming back that worries me most, i know that may seem very vain but i look like a puppy with distemper all pink eyed.
this ####### disease and its treatments.
i have rubbery strippey finger nails,black bruised toe nails,little wisps of white hair about 2cm long,chemically induced menopause with hot flushes all through the night,skin peeling from soles of my feet,aches and pains in my joints, lyphodoema and fear
like the rest of you i was not given the information about side effects and that hair loss may be permenant. in fact whenever i have reported a new symptom to medical team they seem amazed that i have bothered to mention its as if i should have been expecting all that Tax threw at me.however if as i hope i can hang around a bit longer because of treatment and spend a little more time with my baby grand daughter i will remain bald and eyelashless.

I finished six lots of TAC chemo June 2008. Still have no eyebrows, or nasal hair (this is a real pain), the few eylashes I have are very thin and short and I am still bald on the crown of my head. My hair has grown back beautifully all round my head, but like Friar Tuck I am bald on top. I keep what has grown very short. I don’t mind as much now I am used to it, and I just make sure to wear a sun hat in the sun, I got my head sunburned in Crete last month so am really careful now. People will just have to take me as I am. I also had a bilateral mastectomy and sometimes I wear boobs and sometimes I don’t. I am still me and just hope I don’t ‘frighten the horses’ too much. I find that most people are aware of what has been happening to you and either ask outright or ignore it. My grandchildren are wonderful and after a few initial questions just accept me as I am, if children under the age of six can accept you surely adults should be able to.
Best wishes and love to all
Nonny

Just wanted to bump this up incase anyone else is having ongoing alopcia after having Taxotere.
The official term for this is PSA - If anyone is worried about their hair not returning please contact me and i can put you intouch with our ever growing support group.