Hair Loss and Hair Loss treatments

Hello Everyone,

Hair loss for me was one of the first things I thought of when I was told I would need further treatment after my surgery. The thought of losing my hair threw me into a panic. I felt a bit silly at the time as I thought here I was facing cancer and some pretty intensive treatment and I was worried about my hair. But hair is an important part of your identity and for me I knew I was really ill but I did not want to look as if I was ill. I even considered at the time whether or not to have further treatment because of the hair loss.

Now post treatment I understand more that there are options. Some people seem able to brave the shave and use this way of gaining some control. Some people focus on wigs. There are actually some great ones out there that look realistic and also some fun ones if you have the confidence! I was adamant at the beginning I didn't want to wear scarves but during hospital visits I saw so many people with a variety of scarves, hats and beanies. Some of the scarves were really pretty. 

I used scalp cooling during my chemotherapy treatment in Spring/Summer 2022. I also had a wig and scarves. It is not something I had heard of until I was told that chemotherapy would be a necessary treatment for my cancer. Scalp cooling can not be done for all cancers and some regimes seem to have better results than others. There are also instructions that need to be followed to protect as much of the hair as possible. I believe that it did help protect my hair follicles and led to quicker regrowth. My hair started to regrow during treatment.

Scalp cooling worked well for me on my carboplatin/paclitaxel regime. It was uncomfortable at the time but manageable.

Deciding to scalp cool is very much a personal decision but if you are considering doing it, it is good to share experiences. If anyone has any questions about scalp cooling or my experience of hair loss, please ask.

On my regime I was expected to lose all the hair on my head and all body hair. I used Paxman scalp cooling all through my treatments. My hair still shed and I experienced thinning all over but had no bald spots. I lost body hair between the first and second cycles of treatments.

Scalp cooling does not protect eye lashes and eye brows. My eye brows thinned by the 3rd cycle and along with eye lashes came out after my final chemo. They both came back within a couple of weeks.

I had a wig on standby as felt it was good to be prepared. I did not wear it a lot as I did not need to. I also found it hot and itchy. There was a lady and a hairdresser who visited my hospital weekly to give advice and who were able to accept NHS vouchers. She was also able to provide hair toppers. There was a Macmillan volunteer who came on the same day who helped show you all the different varieties of head scarves and turbans. I found it fairly easy to find wigs and chemotherapy head wear on line but it was good to try things on in person and have the support.

I also bought some pretty scarves, some pretied and in a variety of materials. Also a silky pillow case so when my hair shed, it did not matt. 

I used hair fibres sprays to disguise thinner parts of my hair and root touch up spray to disguise roots. 

I suppose what I am trying to say, is that although hair loss can be a side effect of treatment for cancer, there are choices that you can use to best feel a bit more in control and a bit more like yourself.

I hope this helps someone who felt as I did this time last year. If you lose it, it almost always comes back and I now have a thick head of hair again and having my hair cut for the first time in a year, tomorrow. 

if you do need support, please do reach out

Jane

My experience with Docetaxel has been completely different. I finished chemotherapy in June 2022 and waited for my hair to grow. After 7 months and increasingly very concerned I looked on google, page after page of hairloss and Docetaxel. I learned that I have PCIA persistent chemotherapy induced alopecia. My hair will never grow back. I read many studies and then I came across a study in 2022 that said that post menopausal women had a 37.8% risk. I read that figure many times because it wasn’t the 3% chance that I was told. The hardest thing to accept is that this study was done by my hospital and then put into their online library and ignored. What is the point of research if it isn’t to educate, inform and improve outcomes for patients ?

my mental health is all over the place. When I look in the mirror I will always be a cancer patient. It’s devastating.

To anyone who reads this please question your oncologist, do the research it’s there if you look. I didn’t but I wish that I had.

I am so sorry that you are going through this.

I am shocked that this study said 37% risk and I agree that research should be used to enable patients to make informed decisions.

I hope that someone will see this who has experienced docetaxel and the PCIA and will be able to offer some support. It is no wonder that your mental health is all over the place. You could also consider posting on the Chemotherapy discussion thread and ask directly if anyone has experienced PCIA.

Do you feel that talking to someone would help? Your CNS, your GP or perhaps give the support line a call and find out what support is available in your area? 

Jane

Hi, 

I've just been diagnosed with breast cancer and will need chemo.

I have never been a person who spends a lot of time on my hair, i just wash dry and leave it.  But  the though of losing my hair is really worrying.

I have not heard of the scalp cooling cap before  but  something I will try. Thank-you. 

Hi Jane thanks for the reply, this is the study . 605 questionnaires sent 1 year post chemotherapy, 383 replied only 12 didn’t have hair loss. This was done in 2020 by my hospital.The Christie, Docetaxel and post menopausal women 37.8% chance of PCIA. I thought a 3% risk of permanent hair loss was very good odds, I wouldn’t have agreed to 37.8%. There are hundreds of us as this study shows. I have since read a book by a lady called Shirley Ledlie, this happened to her 18 years ago and she’s been fighting to get the truth told ever since.  

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

Thank you- I will have a look. 

Hi

i had my last cycle of flot chemo mid March this year, my hair thinned a lot so I had it cut short and it has not yet started to grow back only a little length in a few places so I am left with thin, patchy hair.  All I wondered is what is the normal timescale for it to start growing back? I am hoping it’s not permanent as, like others have said, I have never made a big fuss over my hair but I really would like to just have a consistent covering which grows.

Hello JacPop

I used the cooling cap and I had some regrowth during chemo. It was probably a couple of months after chemo finished that it started to come back stronger. My last chemo was Aug1st and I was on a 3 week cycle- so I felt my chemo actually finished at end of August. My hair began to thicken up and the thinner patches filled in by the end of October when I went for my check. By the end of November I started to look more like me. I had some shorter bits at the sides that took a bit longer. Jan/Feb I had what I would call normal growth got me. By May I needed a hair cut as I had thick hair but different lengths- my hairdresser evened everything up and cut into more of my normal style- albeit a bit shorter. My hair is now thick, in good condition and about an inch shorter than before chemo. (shoulder length) I have not got what I would consider chemo curls but my hair is wavier than it was before. 

I think you are about the stage where I started to get some proper regrowth. I took photos each week and that helped me because when you look in the mirror each day you don't always see it. Mine was at its worst in August and September. I had a small amount of shedding post chemo. Having it trimmed by my hairdresser was the best thing for me because although I didn't want any length cut off she blended in the different lengths so it is growing back more evenly. I have more layers than I had before and my hair is thicker. 

People do vary and so does the chemo effects so my regrowth may be a bit quicker or a bit slower than yours but it is reassuring that you are beginning to notice a little more length in a few places. That's how mine started. Using lots of hair conditioner helped mine too. 

The other thing that may be relevant was that after my chemo I had 5 weeks of radiotherapy and was not able to eat my normal diet so wasn't getting the nutrients I needed. I was low in haemoglobin and needed a blood transfusion so it may be an idea to get your bloods checked to make sure all is healthy. 

Good Luck

Jane

Hi There was an article in yesterday’s Mail on Sunday about permanent hair loss due to Docetaxel chemotherapy. I finished chemotherapy in June of 2022 and my hair has grown back in some places but not in others. The crown of my head is the worst. After 6 months I checked and found that I had PCIA persistent chemotherapy induced alopecia and that it’s forever my hair will never grow back. It’s devastating. I hope that you’re luckier than me.

Thank you that gives me some hope it will start to get back to normal.  My chemo wasn’t suitable for the cold cap as one of them was a pump I had at home which was a shame.  My hair is fluffy at the back but not growing on top or front yet.  I think your idea of a regular photo is a good idea, it’s easy to forget where you were and not appreciate any progress!

Best wishes