Docetaxel - 37.8% permanent chemo induced alopecia

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Hello,

I’m 58, post-menopausal, received 2 rounds of chemo & Herceptin including Docetaxel. I’ve found out today from former patients receiving this drug that they have had permanent chemo induced alopecia - their hair has not grown back and they are campaigning.

There’s this recent UK medical research paper citing 37.8% permanent loss of hair in post-menopausal women receiving Docetaxel. Read here: pubmed.ncbi.nlm.nih.gov/.../

The three women I’ve been messaging today on X were told there was a 2% risk…. Not 37.8%!
Apparently Paclitexel has a lesser risk. I need to call my oncologist on Monday to change my chemo!

Can any of you share any experience? 

thanks

Debbie

  • Hi Dkbythesea, I wasn’t told at all about permanent hair loss. I had 4 cycles of EC where I lost about 80% of my hair as it’s such a harsh drug. I then had 4 cycles of Docetaxel and Phesgo (Phesgo is still on going) I cold capped throughout and whilst that was particularly nice I had read it helps to save the hair and also with the regrowth because of how it reduces the blood flow to the follicles. I have been lucky and my hair grew back whilst I was having my docetaxel cycles and is thicker than before. I also use hair serums and organic colour system power build which have probably also helped. The paper you refer to was done in 2021 and only on a small response of people replying, therefore overall the percentage of permanent PCIA will be high. I would imagine more studies have been done/continued and this figure reduced hence people are being given much lower percentage now. In order to find out more the study would need to be done on equal split of people having Paclitaxel and Docetaxel. It’s not an equal split in the study 245 docetaxel and only 138 Paclitaxel so the percentages will be relevant to the number and therefore doesn’t give you a true reading. Also whilst the chemo drugs are the same over the years with studies dosages have been changed which will have an impact too. Everyone is so very different and cancer and its treatments affect us all so differently. Whilst I wouldn’t want to have permanent hair loss from chemo I would rather that than the alternative. I know they can possibly change drugs if asked the outcome may not be quite the same (or you could react more to that drug) as everything depends on one’s type of cancer and health and at the end of it there is still no guarantee that one won’t have permanent hair loss even on a different drug. It’s good to speak with your oncologist to get his/her opinion but also find out more about Paclitaxel before taking that option and whether that’s best for you as you might find docetaxel is a better option for your type of cancer and situation. 
    Wishing you all the best.

    Hugs from cuffcake x x x x x

  • Also having looked at the report there is nothing to say how many people used the cold cap, was it used throughout whole of treatment or just part, what chemo they had prior to docetaxel or Paclitaxel, did they use any supplements or treatments to help with regrowth after etc there is so much more information needed to be able to give a true representation.

  • Thank you, yes. I was offered cold cap, I wasn’t told it was crucial to being a post-menopausal patient on Docetaxel to use it and for every session. Apparently Paxman, the cold cap machine manufacturer has specific guidance for its use with Docetaxel. Were you post-menopausal when you had it? 

  • Hi Dkbythesea, no I was pre menopausal but only just. I’m 53 and my periods stopped once I started chemo. I’m now on tamoxifen but before starting it my oestrogen levels were checked and I was told they were low already. My oncologist said I would probably be on tamoxifen for a year or so then would re evaluate it to see where I’m at. I cold capped throughout my treatment and when I thought about giving up was encouraged by not only my hubby but also oncologist and nurses to keep going. They even gave my a surgical hat to wear underneath to help as I did have bald patches. The 8 cycles soon passed and it was less time with the cold cap on for docetaxel than EC which was actually nice. Yes Paxman has a great write up and study info on their website and I was given that to read by my breast care nurse. I was very lucky that my chemo unit had the machines and that the nurses would take the time to ensure caps were fitted well too.  
    Wish you all the best for your chemo journey and that your oncologist can help put your mind at rest with figures and which chemo treatment.
    Hugs from cuffcake x x x x x

  • Hi 

    just finished chemotherapy I had 3 EC and 9 paclitaxel did not cold cap my choice,  but obviously lost all my hair finished chemotherapy a month ago now a thin layer of hair growing back hopefully I want have a problem I used uklash hair growth serum and faith in nature rosemary shampoo and conditioner , I don’t know whether it did help but I will carry on using it.

    The way I look at it,  sad point about all this we need the chemotherapy to keep the cancer away , I don’t look at the side effects to much because we all react differently fingers crossed my hair will grow back has before .

    all the best xx

  • Thank you so much for your reply. Could I ask if you are post-menopausal (as it’s that (my) age bracket that are reporting permanent hair loss with Docetaxel?

    Great that yours is returning a month on even without cold cap.

    Yes, overcoming cancer is the priority. But if I thought my hair wouldn’t come back, that would be devastating too.

    So pleased you had a good result so far with Paclitaxel!

    xx

  • Hi I am/was post-menopausal. Docetaxel was ok for me in this respect. I cold-capped and lost about 2/3rds of my hair. I retained enough not to have to wear a wig. BUT I think my dose was reduced before treatment began. I know I always had to wait for my chemo as my dose came from the pharmacy and wasn't always there waiting. My treatment seems to have worked so far fingers crossed. I have still got a good head of hair for which I am very grateful, it is about my only asset. I  am now 3 years on. Have a look at my profile. Best of luck x

  • Thank you so much! X

  • Hi Dkbythesea

    I was not told about permanent hair loss on docetaxel, I was told I would lose my hair but after treatment it would grow back.

    I had 3 rounds of EC in which I lost my hair as I did not want to cold cap, but as soon as I started my docetaxel my hair started to grow back  straight away on that chemo.

    It's hard to decide what to do for the best as we all react differently. My hair grow back a bit finer than before but I think that was more to do with the menopause than the chemo.

    Hope the rest of your treatment goes well 

    Carolyn x

  • Hi Dkbythesea, on the face of it that research is certainly alarming but as Cuffcake says it might well be flawed. I too would suggest asking your oncologist about it. My oncologist told me that she had only ever had a couple of patients whose hair didn't grow back after docetaxel and they had other medical issues. I was post-menopausal before chemo and didn't cold cap. I did lose all my hair but it has grown back very thick and curly (it was straight before). I also haven't used any products since then other than ordinary shampoo.