Hair Loss and Hair Loss treatments

I am sorry to hear that has happened to you, if I’m am honest that is what I am concerned about.  I never had thick hair but now I look a bit bald in places which I hate.  I will have a search to see if this is known long term effect with the chemo I had. 

Thank you 

Hi

was the chemotherapy that you had Docetaxel.

Hi

Yex I have checked and one of the chemotherapy I was given was Docetaxel.  Is there a way to check if I have permanent hair loss? I will try and fine the news article as well.

Good evening everyone

I am starting chemotherapy this Friday, I was diagnosed with Breast Cancer in March 2023. I have decided not to us the scalp cooling, I’ve read a lot about it and I decided not to bother with it because I don’t really want to be sat in a hospital chair any longer than I need to really. I’m also not to worried about my hair, I know there is chance it will grow back different, but the thought of being cold for 2 hours just isn’t for me. The Breast Care Nurse told me that in her experience all the patients she sees back have lost all/or some of their hair despite using the cap. I just thought I’ll just except I’m going to look different for a bit

I have a lovely wig, I was given a prescription which covered up to £200 towards the wig and I’ve bought some head scarves as well. 

I don’t know what will happen after chemo with my hair, I know it will never look the same whatever I do. At least I know a nice place to buy a wig as back up  

I wish everyone look with their chemo journey ️ 

Hello Daffodil,

It's very much a personal decision. Most people do still lose some hair with the cooling cap and it does potentially add a little time to the day. Am glad you have sorted a wig and scarves. I wish you well with your chemo.

Jane

Hi

Docetaxel has a horrible history of permanent hair loss, its mainly on the crown of the head. I watched many YouTube videos and my hair wasn’t growing like the women in them. I became really upset and concerned. I now know have I have PCIA but I didn’t realise this until I looked on google. I found that my hospital had done a study in 2020 which showed that post menopausal women had a 37.8% chance of PCIA persistent chemotherapy induced alopecia. I nearly died of shock when I read that because I was told 3%. I have read so many studies since then all showing much higher incidence of PCIA than oncology tells us. I learned that it was permanent and that my hair would never grow back, it was forever. I found a lady called Shirley Ledlie on Twitter who has PCIA and has written 2 books about it. Docetaxel is a horrible drug and  I am angry that I wasn’t offered a different drug Paclixatel which has much better results for hair loss but the same cancer outcome. This is the study that my hospital did then ignored they put it into their online library and ignored it and carried on telling us 3%.

https://pubmed.ncbi.nlm.nih.gov/33350015/

Hi
I had Docetaxel chemotherapy and my hair hasn’t grown back I have PCIA persistent chemotherapy induced alopecia. My nurse told me exactly the same but she was wrong. If I could do it again I would have the scalp cooling as recommended at every chemotherapy session to protect my hair follicles. The science behind it shows that it works. There is nothing worse than losing your hair, expecting thait will be temporary and then finding out that it’s gone forever. Your hair doesn’t grow back thinner it just doesn’t grow at all, mainly on the whole crown of your head. The training that Paxman the scalp cooling experts give oncology nurses is not what she is telling you and if she’s telling other patients that then that’s horrible of her because it’s not correct. It’s only an extra 30 minutes in the chemo suite. I wish that I had used it. People say it’s only hair. Yes it is until it’s your hair then it’s devastating. 
Carol.

Hi

sanofi Avensis the manufacturer of Docetaxel say that if hair hasn’t grown back after 6 months then it never will. I hope that yours grows back because it’s so hard when it doesn’t.
 Carol 

Thanks everyone, I’m sorry to hear about the hair loss situation and your hair not growing back, I can understand why that is upsetting. 

I am having Paclitaxel and EC (Epirubicin and cyclophosphamide), so I’m not having Docetaxel as part of my treatment. So the research I’ve done was based on this and the Breast Care Nurse was being horrible at all, she was lovely and was just giving her opinion on it. She wasn’t saying don’t use the cap, she just said she still sees hair loss, she just wanted me to be realistic as I thought it would prevent hair loss completely. 

Im not saying no one should not do it, if people want to use then they should and they should be given the option as well, it is wrong if that is not happening. But I’ve made a personal choice not to use it based on the information I have found. 

Hi

My advice is use the cold cap at every chemo, as you can see from the study that I sent you could have permanent hair loss with Paclixatel too. When you have chemo you will lose your hair that’s normal, it’s expected. When you use the cold cap your hair will still fall out. The point of it is that it protects your hair follicles so that after chemo when you’re hair has fallen out the follicles will have been protected. It should be worn at every session hair loss or not. My nurse’s we’re lovely too they just gave me very bad advice. Please google Paxman the company that manufacture the cooling system. They have almost 100% results if the equipment is properly used. My hair has gone forever and I wouldn’t want anyone to go through the same because it’s devastating. I wish that I had researched before chemo but I only looked when I realised that I had a problem. Far too late. I wish you the very best of luck but advocate for yourself the nurses might be lovely but their advice is wrong either through lack of training in using the system or the fact that it’s a lot more time  work for them if every patient asks for cooling .

Paclixatel and Docetaxel are mentioned in this study

https://pubmed.ncbi.nlm.nih.gov/33350015/

carol .