Thought I would just update on my experience with taxotere in case anyone looks at this post.  I had FEC-T chemo 9 yrs ago and after taxotere suffered permanent hair loss.  I was initially told my hair would grow back and heard nothing about the possibility it wouldn’t. I felt very depressed about my hair loss, especially as I personally felt there was no support for me afterwards from the hospital with regards to this issue.  At the age of 40 I had to start wearing a wig permanently.  Whilst it is only a small percentage who this affects with hindsight I would urge anyone to either try the cold cap or ask about alternative chemos as I would hate for anyone to go through this.

Supposed to be starting chemo on the 17th August with Taxotere as one of the drugs.  I told the Oncologist that I was concerned about hair loss, as my father had alopecia totalis, and I also have already lost the bulk of my body hair (and most of my eyebrows!) though I still have hair on my head.  I am going to ring tomorrow and say that I am not happy to have the chemo if this drug is included, and will politely decline.  I'd rather be dead than bald.

In case you think this is an over reaction, I would say that I know how badly being as bald as a billiard ball affected my father's life, and it is not a fate I would wish on anyone.

I am so sorry, MsB that you have had to suffer this.  And being reassured and lied to doesn't help.

Go for the cold cap if you can tolerate it. I didn't and live to regret my decision. My once head of thick shiny luxurious hair is now a shadow of its former self. I lost a breast as well during treatment but my grief at losing my beautiful hair has been much greater. 

I had my chemo 10 yrs ago, but like you I would urge anyone to give the cold cap a go as I wish I had too.  I had a mastectomy too but found that easier to cope with as it wasn't obvious to other people, whereas your hair loss is something you can't hide as well.  And to the people who say to you 'it's only hair and at least you're alive' they have absolutely no idea how it makes you feel, especially on top of everything else we've been through.  It's been 10 yrs for me but it would be interesting to know if anything has changed in that time with regards to more support from the health care system for permanent hair loss after chemo. 

I just want to thank you for your post. I am having EC T chemotherapy and using the cold cap but have lost a lot of my hair (3rd cycle EC).  I haven't coped with it very well and have asked my oncologist about the possibility of it being permanent and what I can do but there seems still to be very little to prevent it if you are having a taxane like docetaxel. There's been some recent research about it such as this article

 Permanent hair loss associated with taxane chemotherapy use in breast cancer: A retrospective survey at two tertiary UK cancer centres - PubMed (nih.gov) 

which advises that oncologists need to address the issue. I thought the percentages for breast cancer patients who are post menopausal and taking AIs (as I am) were worryingly high, but my oncologist does not seem to be aware of it, nor do the cancer nurses.  I don't think they are lying but they think it is very rare.  I feel I have little option to go ahead with the docetaxel but am trying to get some sort of alternative.  I don't know if the cold cap is enough to protect the follicles for re growth if you have lost patches of your hair anyway and there seems little research to tell me. I am so sorry you have lost your hair, these few weeks without mine have made me very depressed and I can see if it were long term that I would struggle to cope. More needs to be done in this area so that people can feel reassured or at least fully informed.

I'm sorry to hear that you're having a hard time.  It's such a shame that there appears to be no progress in this area and that drs and nurses are not aware of the degreee and distress permanent hair loss causes. I was eventually referred to a dermatologist but he said drugs usually given to women with hair loss were not safe to take after having breast cancer, so the only help I got was a prescription for 5 yrs for 2 wigs per year on the NHS.  I eventually found a company that deals with ladies with hair loss and now have a hair replacement system which is better than a wig, but the downside is that it is very expensive.  I even told my breast care nurse about it and she had never heard about it, and even phoned me some time after the fact and asked for the information for another patient.  My breast care nurse also admitted to me that she knew of more cases of ladies reporting long term hair loss to some degree after having taxotere.  Please don't give up hope though. I know ladies who had the same chemo as me who's hair grew back better than ever. Sending you lots of positive thoughts and wishing you the best in your treatment.