Hi Lynn,

Welcome to Cancer Chat and thanks for telling us about yourself. I am not a medical person  but I have looked up about your question and have found that 8 out of 10 people will probably lose their hair but it almost always grows back once treatment has stopped. There is mention of a cold cap which may help but you need to talk to your oncologist regarding this. I would just say If you do go online to find out more about your treatment, try to make sure you only use the well known site like Cancer reasearch  and Macmillan ect, as there is a lot of misleading information out there and some sites have out of date info. Alternatively there is a free phone number for this site 0808 800 4040 and you can ask the nurse who I understand is extremely helpful.

Hope this helps, Please take care and do let us know how you are getting on, best wishes, Brian

I am on paclitaxol which is in the same group of drugs - and yes I have lost my hair. There is a cold cap that you can wear whilst having the infusion which is really effective at stopping hair loss and I think all chemo depts have them - just tell your cancer nurse/oncologist that you would like to make use of it and I am sure there will be no problems in you wearing one. I have heard from other people who use them that they seem more effective on hair that is shoulder length or shorter but have seen several people who have used them and they look fine. Good luck!!

Thanks for your replies. Unfortunately I've already lost most of my hair after the first Epi, so I don't think the coldcap would be effective on a bald head. I'm not worried by temporary hair loss, but I don't want to be permanently in a wig.

Since I'm considered low risk I was given the choice of having chemo so I really want to make the right decision. Unfortunately bank holidays are not a good time to get help, so I'll try the help number after Easter. I'm due to start Taxotere/Cyclophosphamide next Friday and I was shocked to see that this combination showed a 6% chance of permanent damage to the hair. Carrying on with the Epi means 7 months of treatment instead of 3 months which is a big plus, but I 'm not certain which is best for me. I asked my Oncologist and he gave me a guarantee that my hair would grow back with TC. He said he had never heard of anyone suffering permanent hair loss, which concerns me since I have read about lots of ladies suffering this with a quick google search.

I know that this may seem a trivial thing, but at the moment I am seriously considering just not bothering with chemo at all.

Thanks again for your replies.

Hi Lynn,

Just to put what you wrote about a 6% chance of permanent hair loss, I would suggest looking at it another way. There's a 94% chance it will not cause permanent hair loss. There are always two ways of looking at things. You also have to consider which is more important long term. Doing everything possible to beat cancer or cancelling treatment because of worries about hair loss. I know for a woman, much more so than for a man, its a very difficult dilemma and one I don't envy you making a decision about, but just thought I should put an alternative viewpoint as I know when we have cancer Its nice to get someone else's input. I feel sure you will make the decision that's right for you.

Please take care Brian

I have to say that what Brian has said is very true - the chances of permanent hair damage is very minimal and, like your oncologist, I have never known that to happen. I have been 'in the system' about 7yrs now and met many people going through chemotherapy and have never met anyone whose hair has not grown back - usually curly - but it comes back thick and fast! I had taxol and ACE treatment for 8 cycles a few years ago and my hair grew back very quickly after the treatment had finished. Take care Lynn and I hope you make the right decision for you. Max xx

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.