Temporary hair loss but not forever alopecia

Thanks so much for your comments, it's just so good to hear someone else who has heard about this, instead of the blank looks that I get everywhere (and this also includes Cancer support organisations).  It's just so hard dealing with it alone and not getting any answers.  Thank you.

@MarcieC I'm so sorry to hear this has happened to you.  Some women rock the bald look but it's not one that you want foisted on you.  I had read some discussion about it and when I had my first consultation with my oncologist and the hair loss issue came up, I said that I had heard something about one of the chemo drugs.  He knew straight away which one I was talking about and said he doesn't use it because of the side effects (at least, that's how I remember the conversation - I wouldn't go to court on it).  So, the oncology profession in Australia is aware and it is appalling if the doctors are not providing this information.  I should say that my oncologist also teaches so I assume that he is aware of what is current.

Hi Cynthia, I'm afraid you're wrong about hair loss from chemo not being permanent in some cases.  I don't want to scare anyone but it needs to be known that unfortunately, as I've discovered in some cases it can be permanent (depending on the chemo used).  I finished chemo roughly 18 months ago and my hair hasn't grown back.  I have been trying and trying to find information and answers ever since I noticed it wasn't growing back.  No one really knows or talks about "Chemo induced Alopecia", they (the medical specialists) all say "it will grow back" or "everyone is different and it takes time".   I've tried scouring the internet to find the answers that no one seems to want to provide to me.  What I've found is that they say that around 6% of cases, hair doesn't grow back after the drug Docetaxel is used.  The figures could be higher (I believe) as I don't believe anyone is recording the stats here in Australia.  I have seen that there is a support group and also a class action in America for this very issue but there is no information here in Australia so people like me are just left to deal with this totally alone.   This is such an emotionally devastating long term side effect which has totally affected my quality of life and my whole demeanour.  People often say "at least you can just wear a wig or scarf", not realising that wigs are hot, uncomfortable, expensive as well as other problems such as wind and rain.  Also as you don't wear them all the time, each time you look in the mirror you have a constant reminder of what you have been through and the disfigurement you now have.  I'm writing this with the hope that this gets the attention it deserves, and hopefully if other women who are experiencing this horrible outcome will also add their stories about how we weren't warned, or informed of the statistics, or given an alternative chemo to ensure this wouldn't happen.

I had a colleague years ago who had alopecia. She was very elegant and stylish with a wig and scarf ensemble but would never have done the Sinead O'Connor thing! Neither would I, my scalp
has too many bumps and scars! But I have huge admiration for those who can and do. I was lucky, I didn't have too much concern about losing my hair but I really didn't like the way I looked older bald! 

Hair loss was a huge loss for me. And until now I still struggle with it. I didn’t know that some women have been affected with permanent hair loss as I haven’t seen those threads @Afraser

As a thread on this site notes, in some rare cases, hair doesn't grow back. It has been heartening to see the hair tyranny for men slip away -  the No 3 clippers option or shaved is now entirely acceptable instead of the toupee or the combover - well, apart from the President of those United States. But not for women. I realise that many women have a strong identity link with their hair, but when you have been bald you get an insight into the lives of others permanently affected and that hair is not you or your life.