Todays Mail on Sunday has a story in the Review Suppliment about the effects of Taxotere.
“The drug’s manufacturers, Sanofi-Aventis, say hair loss is a common side effect of all chemotherapy drugs, and claimed permanent baldness was known by doctors to be a ‘very rare’ complication of such treatments.
However, researchers have found that as many as one in 16 patients using Taxotere could suffer from persistent alopecia - permanent baldness - but campaigners say patients are not being warned of the risk.”
This is a difficult one as I wonder how I would have responded if I’d known except get very worried about it. I suppose for people who are very borderline for having chemo this is particularly significant as they may opt not to have taxotere but have something else. For those of us who had to have it then it’s much harder, it could be your hair or your life. Horrible!
Elinda I think tax is only used for women who have cancer that has progressed, so probably not many for whom it is a borderline decision. Even so, very distressing.
Taxotere is not only used for advanced cancer it is used adjuvantly -I experienced its delights.
This SE has been a known fact for some while and there are women who post here that have experienced it. Pineapple will hopefully post in response to this. If you do a search for “permanent hair loss” in posts then you will find quite a few mentions of it. I think the women who have suffered this are very angry that this SE wasn’t highlighted to them prior to tx.
The hair loss side of things is certainly traumatic but some women are suffering permanent pain from neuropathic damage. Taxotere is a very tough drug for some women.
I am due to have 3 Tax after my 3 FEC as part of my treatment plan - my tumour was large and it had progressed to lymph nodes that is the reason for my Tax. I am a bit concerned about the side effects paticularly if they are permanent rather than temporary - but not sure if I have any real choice in this - its seems it is a very strong and effective drug and for me improves my prognosis. I will speak to Onc about it though.
I had 4 tax followed by Herceptin and I found it took a very, very long time for my hair to grow back so that it was just long enough for me to be able to uncover my head. The nurse who came to my house to do the Herceptin every 3 weeks said a lot of ladies were experiencing this.
This is very interesting - I also remember Pineapple posting about this in the past. For me, 17 months post taxotere, my hair has returned with no problem BUT my eyebows are so fine and sparse that it still looks as though they haven’t grown back. I am resigned to using eyebrow pencil permanently now (I know tattooing is available, but my radiotherapy tattoos are more than enough for me!)
hi all, I had 6 tax in 2008, having had 6 FEC in 2004. It took a lot longer for my hair to come back after the tax than after the fec, which I thought was probably because of the herceptin I was also on at the same time and after the tax. Now, my hair is back as long and thick as it was before, but my eyebrows are sparce and my underarms are virtually hair-free! I was not told of the risk of permanent alopecia but think i’d still have taken the tax as like you say,Elinda, I’d rather lose my hair than take the risk of not having the tax.
I am 4 months post Taxotere & although my head is covered in hair & I have discarded the wig, it is obviously very short & I think I look like a man in drag. I wasn’t warned before chemo that I might lose it permanently, & in fact wasn’t told that losing it was anything to do with the Taxotere. I had 3 Fec first, & lost the hair on that so wasn’t aware that Taxotere was affecting it at all. I started to see the odd comment along these lines on this site, but tried to ignore them. I didn’t actually come onto the site until after my chemo, & I’m actually quite glad about that - my SE’s were bad, but other peoples have been even worse, & I’m such a coward, if I heard of any horrendous SE’s I would have been sure I was going to have them. However, getting back to the hair, if they had told me the baldness might be permanent, I would have seriously thought about not having the treatment. I know loads of you will think how stupid, but I don’t think I have ever been so devastated as when they told me I would definitely lose my hair.
The crucial thing here is if the manufacturers have been underplaying the risk of permanent hairloss. And are individual oncs/hospitals at fault for not fully informing patients that there is a small risk of permament hair loss?
My onc went into every detail of treatment - risk of heart damage from FEC etc. But at no point did he mention risk of permanent hair loss with Tax.
Could there be a class action brewing out of this if it is happening all over the world?
I had 4xfec,4xtax in '04. I had no problem with the hair on my head returning very quickly to its thick and healthy state but my underarm hair never returned and the hair on my once VERY hairy legs is barely noticeable! I’ve still got peripheral neuraphy in my toes but I hardly notice it these days.
I’m eternally grateful that I was offered a place on the taxol trial as in those days it was only given to patients whose cancer had spread outside the lymph system. I’m sure that’s the reason I’m still here and healthy after the 35% 5yr survival pronosis I was given just before Christmas '03.
Pineapple is the lady in the aricle-she has waged a very determined campaign for recognition of this rare but proven side effect.I have no eyebrows 3 years since my last taxotere.I also still have peripheral neuropathy in my toes.However like joseymarie I am very grateful to have been given taxotere[no underarm hair either] and though I am very glad to have hair on my head I would have sacrificed it for the chance to have this drug.
vx
I’m 3 years on from Taxotere next month and can honestly say my eyelashes have not been great since they returned, very sparse and stumpy. When I was on Tax, the fingernail on my wedding finger kept trying to lift up (it was coming away at the corners) and I now have to keep it very short as it splits up the centre and is ridged - my toenails are pretty grot looking as well. I have the occasional touch of peripheral neuropathy in my fingertips too, it started about 3 months ago.
Hi Ladies, I’m on weekly tax (3 on one off) for liver and spine mets. So far, I’ve kept my hair, albeit in poor condition. My eyelashes have gone very sparse and I’ve lost a clump but only on the right eye (weird) My fingernails are splitting and peeling constantly. The onc told me at the beginning of the treatment that I may or may not lose my hair and that because I’m having it weekly the chances of losing it plus all the other side effects are less than if I was having it monthly. So far, he seems to be right, but at no time was I ever told that I could lose my hair permanently. I would have still taken the treatment though and coped with it somehow. The way I look at it is that it’s better than the alternative!
Hope you are all feeling well today, take care, Dianne x x x
I asked my onc about this - and his personal experience treating with it. His answer was he hadnt ever had a patient whose hair did not grow back “but he wouldnt like me to be the first”
So i think it is very very rare; and thankfully i wasnt his first patirnt with alopaecia afterwards.
Ditto Chris - I asked the same and my Onc said the same - never had a patient on tax whose hair had not grown back. I am also on herceptin and my hair is back, very thick and very dark (still short) so I don’t believe that herceptin slows down its growth and other ladies who I talk to at the Unit on Herceptin have great hair. Just my experience. I know before I started herceptin I read a post that stated hair grows back at half rate whilst on herceptin - not in my case. I have a friend who finished chemo end of Sep 09 and is still wearing a hat. Everyone is different.I finished chemo in Nov 09.
Hiya all,
I wondered if that was pineapple in the article.
I am now 1 year post chemo 4x4 EC & Tax, I lost my 31 inch lovely hair within 3 weeks, I also lost my eyebrows straight away, I lost my eyelashes but that was later on Tax I lost every finger nail (not toes?) anyway I’m pissed off!!
My hair has not come back fully (not as bad as pineapple’s but I still look like the Hamlet advert man).
Even people who were 6 month’s behind me have more hair than me :o(
My eyebrow’s haven’t come back AT ALL !
funny my eyelashes did though?
I have no underarm hair and sparce elsewhere ifchemo you get my drift.
Two of my finger nails are now lifting one is halfway down now and I haven’t had any chemo for 1 year now! and I’m still suffering from chemo.
I was really very badly affected by the chemo,I couldn’t walk from the build up of Tax, but my walking is normal now.
I asked my nurse if she had known it (for your nails to be affected yet again after so long) she said she’d never known it, I asked my complementry therapist (she is ex chemo nurse) and she said, in all her years she’s never seen anyone as badly affected by chemo as me
what with my hair not coming back/nails/eyebrows.She too said she’d never known anyone who’s hair has not come back BUT lets face it Taxotere hasn’t been used long here.
Please if the lady who said she has no eyebrows after 3 years can I please ask how old you are??
No I’m not being nosey but my BCN said MONTHS ago normally it’s the older women that their eyebrows don’t come back on,and she said they should have come back by now as I’m a younger woman.
I am very very doubtfull that my eyebrows or hair will come back now, I’m gonna mention these things to my onc next week but doubt very much he will provide me with any answers.
Of course if I were warned that all this could happen then I still know I would have taken that risk but yes they should warn patients.
I’m hoping that when the chemo finally gets out of my body as I know it’s deffo still in me cos of my nails I’m hoping my hair will come back fully and my eyebrows come back I’m not bothered about underarm hair they can stick that just save money on razors! lol