Hair Loss and Hair Loss treatments

Hi I thought you if you didn't do cold cap on first cycle you couldn't start later on. If it is any help I had 4 ec and three docetaxel. Tried cold cap gave up after 2 cycles ec lost my hair but it has grown back really well. 9 months post chemo I'm about to go to hairdresser for the first time. 

That’s what I thought but Paxman say you can and I guess they’ve done the research. 
why did you give up? 

Hi Kaza

Take Paxmans advice and use the cold cap at every chemotherapy session. I was told that it was used to help stop you losing your hair during treatment which is completely wrong.
After one session and already showing significant hair loss my nurse said poor you it doesn’t work for everyone, so I stopped. That was completely the wrong advice. Chemo will make your hair fall out that’s just a fact, it’s unavoidable.The cold cap isn’t to protect the hair that you have, it’s to protect your hair follicles for future growth. I took my nurses advice and stopped using it. Only much later when my hair wasn’t growing I started to research, contacted Paxman and found out the correct advice that I should have been given.
Docetaxel is a horrible drug for causing permanent hair loss and the Clatterbridge/ Christie research in 2020 says that post menopausal women have a 37.8% chance of PCIA. That’s almost 1 in 2 of us.
There is another alternative chemotherapy for women of our age Paclitaxel. It’s a Taxol and not a Taxane and does have the same permanent hair loss outcomes. 
I wasn’t informed and wasn’t offered an alternative to Docetaxel and I can promise you that it’s an outcome that no woman wants, it’s devastating.

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

Don’t be afraid to question your oncologist or oncology nurse. It’s your body and you have the right to say what goes into it and the best treatment that suits you and not be bullied by them. I can assure you that will happen.
Hair isn’t cosmetic it’s clinical. It causes a lifetime of anxiety and depression if you end up with PCIA. I’m fighting for change for women. Sadly nothing can change for me I will die this way but for women in the future who deserve better it’s important. The research is clear it’s just been ignored. I intend to keep asking my hospital the Christie Manchester why did you do this important research then put it into your online library and ignore it.
Best wishes to you, chemo is horrible. Only we who have had it know. It’s something that you couldn’t explain to me and that I couldn’t explain to anyone else. Listen to the advice from Paxman because it is so important. 
Warm Regards 

Carol x

Paxman are the experts, they invented this equipment mainly for Docetaxel chemotherapy patients. They have years of experience, please take their professional advice.

Thank you I will try but don’t know if I’ll react badly but as you say a lifetime without hair is very serious. I wish my breast care nurse or oncologist had told me how important it was to consider cold capping when using Docetaxel. 
Good luck with raising aware 

Best of luck. Oncologists by definition cure cancer and permanent hair loss is treated as just a cosmetic problem by a male dominated oncology. Every woman that I speak to with PCIA has had the same experience.They quote the 3% that Sanofi Avensis say even though no study in the world agrees with that number. Some even say that hair always grows back. 
I grew up in the time of Thalidomide and for 20 years that pharmaceutical company denied their drug had a fault too. The evidence is clear, it’s just ignored. 
Google a lady called Shirley Ledlie, she was one of the first to have Docetaxel 18 years ago resulting in PCIA. She’s written 2 books on her fight with the drug company, their efforts to silence her and the effect on her life. We aren’t crazy, we are fighting against a big beast but we are right. 

Second cycle I started feeling sick so they gave me extra anti sickness and stopped cold cap for a short time. Next cycle same so I gave up and felt so much better having done that

I’m so happy for you that your hair grew back after Docetaxel but for many of us that isn’t the case. I didn’t have the opportunity to continue after my first cold cap session because I was badly advised by my oncology nurse. I was told it was to keep the hair that I had when the real truth is that it’s to protect the hair follicles for future growth.I found it uncomfortable and strange but I had no other side effects. 
I wish every time that I look in a mirror that I could go back and know then what I know now, just exactly how important it is to wear it. I would happily sit there with a bucket being sick throughout if it meant that I could keep my hair. People say it’s only hair be great full you’re cancer free. I say that I am extremely great full for the treatment that I had and yes it is only hair, until it’s your hair and then it’s devastating. I could have had treatment for cancer and still had my hair at the end too. That was possible.
I want women to have age appropriate chemotherapy according to our menopausal status as the 2020 Clatterbridge/ Christie research shows, be told the truth about the real risk of PCIA and given the option of an alternative chemo Paclitaxel which is freely available.
Much like the pandemic the numbers tell a very different story according to our age and menopausal status. Treat us as individuals with an individual needs and an individual treatment plan. Not the blanket treatment that we are all getting. 
It could have been such a different outcome if that had happened. 
Carol x

The Changing Faces of Cancer- Scalp cooling, Hair loss and Regrowth. - Macmillan Online Community

Here is a link to explain my experiences of scalp cooling during chemotherapy

I've just finished six rounds of EC and cold capped for all.  I absolutely hated it suffering with headaches and nausea for most cycles.  I tried to focus on the future when my hair grows back.  I've lost roughly 70% of my hair and several nurses advised me to stop cold capping as it 'obviously isn't working'.  I wore a surgical cap for the last 2 rounds as my hair was so thin.  My hair looks pretty grim but I do still have some!  I have a wig and bandanas but haven't resorted to them yet.   I'm not sure how long it will take for my hair to grow - no sign of anything yet but it's only 3 weeks since I finished chemo.