My embarrassing body

Who ever knew that Taxotere / Docetaxel caused permanent hair loss? Not me…

My sister stood by my side as I took the clippers, nudged them in close to my scalp, and mowed the first straight track through my hair. We stared at each other in the mirror. Section by section, I carefully removed handfuls of hair and placed them on a tea towel in front of me, exposing as I went the bumps and lumps of my imperfect skull. From the front of the flat, we could hear the TV and the occasional shout of laughter from the children.

It was the first week of January, and my hair was supposed to grow back after a few months at most. It was also a cold, cold winter, and at night I tugged the duvet over my head or pulled a fleecy red hat on, to stop the shivering. My head hurt to touch, and during the day, I wore soft stretchy Buffs, never the wigs.

I mended from the surgery, and received infusions of chemotherapy: the deliciously named Fluorouracil, Epirubicin, Cyclophosphamide and Docetaxel. The magnolias blossomed and I started back at work.

For weeks I made daily journeys to the clinic to receive radiotherapy. Cut Poison Burn. Summer came and we joined Camilla and her family for two weeks in the Greek Islands. In the volcanoWhy wasn’t my hair growing back?

At a routine check-in with my oncologist, I mentioned the lack of hair. “They say it doesn’t grow back sometimes after Taxotere but I don’t believe it“, she said. Back at home, as I scoured the internet, the horrible truth dawned. Cases all over the world of women who’d been treated with Docetaxel / Taxotere, and whose hair had never grown back. Their oncologists all said the same: “I’ve never seen this before” and “It will grow back“. Suspicions of a cover-up, the drug company Sanofi Aventis on the defensive, no-one taking it seriously, women standing up bravely and telling it how it was, and sometimes suffering terrible abuse on social media. My wonderful new world.

A dermatologist confirmed my self diagnosis. She suggested I try Minoxidil, not available on prescription, which meant humiliating requests at the pharmacist for Regaine. First question is always “Who’s it for?“. It didn’t work. I bought wigs, spent thousands of pounds on hideously uncomfortable wigs in fact, tried to get help with the costs from the NHS, and never succeeded. Who writes the sodding rules here? Hope glimmered brightly when an interested dermatologist presented my case at a meeting of the Royal Society of Medicine, which provides continuing medical education in the UK. Nothing came of that. More hope, burning this time, when the US FDA started to take an interest in the side-effect earlier this year, and I am positively on fire now that there is the possibility of a class action suit against the drug company in the foreseeable future. The women of Taxotears, a self-help group composed of baldies like me, are in the front line of these battles. Perhaps you’re wondering what all the fuss is about? These are the heads of some of the women who have been permanently disfigured by the drug, and I am number 9. image

It’s not really the done thing to talk about money, here in the UK at least, but sometimes I think you have to. This week I have committed to spending about £3,500 over the next two years, on a human hair system which was built onto my head over a period of eight hours on Thursday. After five years of wearing hot and uncomfortable wigs, Self portraitand never really feeling like a woman, I can swoosh my hair for the first time, tie it up, sleep in it, swim in it, in fact do everything that I did before Taxotere and took for granted. I feel as if at last I have my life back, and I know that I am lucky.

I should have been told that permanent alopecia was a significant risk of the drug, and then when it happened, it would not have been such a terrible shock.

I did not give informed consent.

And now that I am permanently bald because of Taxotere, I and others like me should have financial help with the cost of treatment like this.

Or is that too much to ask?

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8 comments

  1. Not too much to ask. No. I really hope the class action gains you dome recompense.

    1. Thank you! There are some amazing women in the Taxotears group and if anyone can see this through, they can. So, fingers crossed.

  2. Giovanni Volombo · · Reply

    We should all learn that being informed on what really goes on with the drugs we need to survive is a act of true democracy. I wish you all the best with the latest struggle. Keep up the fight.

    1. Ciao Giovanni, great to see you here. I think the problem is that the power is very unequal in this struggle, with all the resources on one side, and it stops being a democracy. But I understand the point that you are making, and thank you for your good wishes.

  3. Can I be please added to this group? Lise x

    1. Yes, of course!! Sorry you have to join it though 😦 I’ve just emailed the person who manages the group and copied you in, and I am sure you will hear from her..

  4. Oh please tell me more our your human hair system. What does that mean? Where can I find out information about it. I had the same medication. 😦

    1. I’m so sorry you have the same problem…. There are very many of us worldwide. I can tell you where to go if you are in the UK…. But I think you may be in Australia? You can see what it is at Hair Solved – see https://hair-solved.com – that’s where I go. It’s kind of a cross between a weave and hair extensions. Elsewhere you need to search for somewhere that can offer an ‘integrated hair system’. PM me if there is anything else I can tell you X

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