Permanent hair loss-Taxotere

Gotchya

Thanks so much for posting the products you've found useful.  I've not heard of any of these ;)  I'll certainly give them a try and, hopefully, find something that will help

Fortunately, I've probably got enough hair to work with as mine is thinning, rather than huge hair loss.

I really appreciate your help 

My pleasure,it,s devastating to have thinning hair,let alone the lovely woman who have lost there’s for however long,I remember when mine started to fall out,nothing to do with cancer,think it was more hormonal,have had such thick hair all my life,now got half left,but these products make it look a lot thicker than it is.

happy experimenting lol.xx 

Thanks Gotchya

Yes, unfortunately my GP isn't sympathetic and suggested men lose their hair and have to accept it!!!  Yes, he's not got any hair on top!!!  That didn't help me, I can tell you ;) 

I agree, and think it is probably hormonal but, even so, I don't like it that I can see my scalp at the top front, especially when light is above. 

I don't remember Tamoxifen, nor Anastrozole, causing me to lose more hair when I took those about 9 yrs ago but the Letrozole certainly caused it to come out lots more.  I've stopped the Letrozole, after only 2 months, as it caused me effects that I really struggled with so I decided I prefered to 'risk' it (low risk, at only 2%) and go for quality nor quantity ;) 

I'll start experimenting with hair products once i'm feeling better regarding another health issue which is just sapping my energy, so thinking/doing anything is quite taxing just now.  Hopefully, that can be helped and then I can get going on other things  ;)

Take care and hoping all the folks with hair issues see improvements very soon, eh 

Hi all, haven’t been on for a while but wanted to let you know that I have finally been given an appointment with a dermatologist who specialises is hair loss. Meeting her in March so will let you know what she says. 
My hair is no different this far down the line…almost looks like make pattern baldness so I’ve a feeling I’m going to have to accept it’s not coming back. It’s worse than losing my breast. At least when you wear your fake boob you look ‘normal’ but when you see yourself in the mirror with next to no hair it’s a constant reminder of what you’ve been through.

Of course better here and bald but it does get difficult some days. I see there are a lot of lawsuits against the manufacturer of docetaxol in the US but none in the UK that I can see.

Anyhoo will let you know what the dermatologist says next month, hopefully a help for others going through the same thing.

Take care. x

Hi Bramble

I have posted in the past but unable to find anyone who had the same problem, I am on Letrozole which i started at the same time as radiotherapy i had mastectomy, lymph clearance and chemo and lost all of my hair it has now been 2 years since i finished treatment, i waited a year for my hair to grow before seeing a dermatologist because like you i wanted to know if it was ever going to grow back so that i could get on with my life, i was prescribed rogaine which i had already tried myself for 3 months and i had a scalp biopsy but unfortunately after using it for another 6 months i haven't  seen an improvement, my hair is growing slowly but very very thin i can see my scalp and cant go out without my wig.

My oncologist couldn't say whether the chemo was to blame but the letrozole does thin the hair although i know a lot of people have no problem with it, i will have to take it for another 8 years i may consider coming off of it but undecided i feel like an old women but maybe when i'm 80 i will have my hair back who knows. Best of luck .

Hi lulupop you sound exactly like me! Finished chemo 2 years passed on 31 Jan and was put straight on to Letrozole before mastectomy and radiotherapy. Perhaps the follicles didn’t get going before I started the Letrozole. I assume the dermatologist will do exactly as you said but I’ll let you know! Did you get results of your scalp biopsy?

im still having to wear a wig too. Going for a new one on Friday…thinking of going for something colourful but maybe at my age (60) I should just stick to what I’ve got already.  The excitement of a new hair do!!!!

Hi Bramble

I was diagnosed with Lichen Planopilaris but it doesn't really help nothing can be done although the dermatologist did suggest taking Minoxidil orally but i have decided against it as you have to take it for the rest of your life and it may not work. I have also bought a lovely wig which cost a fortune but think of the money we are saving on hair cuts etc.

i have just put a pink colour on what little hair i have as its only my husband and i that can see it, thought it might cheer me up ha ha. Take care.

Hi Bramble22 and lulupop and all,

I am so sorry to read of the problems you are facing. Recovering from cancer treatments is hard enough without having to worry about slow hair regrowth.

A friend of mine had Taxotere and I had Taxol for breast cancer 10 years ago. Her hair took about 2 to 3 years to regrow and remains rather thin to this day. Not so thin that she needs to wear a wig or a scarf now but you can certainly see her scalp through her hair.

I had enough short hair to cover my whole head 3 months after stopping Taxol and stopped using head coverings.

While I sincerely hope that you find a solution to regrow your hair, you should be aware that there is a risk of about about 3% that hair loss will be permanent after Taxotere. This has been documented for some time but my oncologist had never seen a case where this happened - https://www.aheadofourtime.org/.

It is very rare but possible and is definitely something that patients should be informed of. You might be entitled to some financial help with wigs if the problem persists.

It's definitely worth chasing up all other possible causes. Thyroid problems can also cause hair loss for example.

Take care

Miranda

Hi Miranda, thanks for taking the time to contact me. Yes I knew about the percentage of people whose hair didn’t grow back after docetaxel, in fact my research shows it could be higher than 3%
I was at the oncology unit the other day for bone meds and spoke to the head chemo nurse there, he had never heard of this happening and in fact said that people should be warned about it before they start so that they could make choice of having this treatment or try something else. I’m amazed that they don’t know about it!!

Hi Bramble22,

When I heard about this risk I was due to start Docetaxol treatment soon. I contacted my oncologist who told me she had never heard of this. I asked if there was an alternative and she said yes, weekly Taxol instead of Taxotere every 3 weeks. I'd have to go for treatment every week. I'd have happily gone every day I can tell you!

I think Taxotere is preferred because it can be administered at 3-week rather than 1 week intervals and therefore hospitals can treat more patients.

There was also some research done in France around 2017 indicating that there were several unexplained deaths of patients on Taxotere. I know that some hospitals stopped using it at least temporarily. I don't know if it is still used as widely as it was 10 years ago.

Whatever the current policy is, there definitely needs to be more communication around the risks.

I hope you find an absolutely glorious new wig.

Take care

Miranda