As a weekly columnist in the Bella magazine UK in the early 2000s, Shirley Ledlie was keen on storytelling. Little did she know that when she faced a stage 2 breast cancer diagnosis, her tale of Taxotere gone wrong had only just begun. Shirley Ledlie faced what thousands of women face every single day; a horrible, and terrifying diagnosis. And in her chemotherapy treatments, she faced the same pain, sadness, and physical challenges that thousands of women have to face every year with breast cancer. But long after her Taxotere chemotherapy treatments stopped, she faced something few women should ever have to; the prospect of permanent hair loss.Naked In The Wind: Chemo, Hairloss, and Deceit, Shirley describes her journey of discovery about Taxotere, and the manufacturers that hid potential side effects from consumers. Her riveting tale leaves readers asking one question; how could Sanofi-Aventis get away with this?We recently interviewed Shirley to hear first-hand what her day-to-day experience was like, and how living with permanent alopecia has changed her outlook. Below she shares both her harrowing tale and even offers some questions breast cancer Taxotere patients should ask their doctors, and oncologists before diving into a chemotherapy regimen.
Periscope Group: Which stage of breast cancer were you diagnosed at?SA Ledlie:My tumor was grade 2 and stage 2. I had a lumpectomy with a sentinel node biopsy. This procedure found one node positive.Periscope Group: Did you do regular screenings? If so, how often?SA Ledlie:Because of my relatively young age, 46 years at the time of diagnosis, yearly mammograms were not an option for me. I used to check myself probably once a month. I lost a childhood friend to breast cancer when she was only 32 years old so I have always been aware of the importance of self-examination.Periscope Group: When you discussed chemotherapy options with your doctors and oncologists, was it clear to you what each treatment was? Did you talk in depth about your options or did they simply make a recommendation which you followed?SA Ledlie: There were never any options discussed. I was told what my treatment plan was and that was it! I do remember my surgeon telling me that I was going to have the new chemotherapy drug called Taxotere, and that I was very lucky to be receiving it. He added that had I been receiving my treatment six months earlier I wouldn’t be having this new wonder drug. I was so scared I just sat there and would have agreed to anything he said. My life was in his hands! Taxotere was used for many years before this but only as a single agent and on terminally ill patients. This ‘new regime’ was now to be used in combination with other chemotherapy drugs and on early stage cancer.My surgeon didn’t really go into side effects, he just talked me through the treatment plan that my medical team had come up with for me. When I had my next meeting with the oncologist I was given a sheet of paper with side effects and what to expect but I can’t remember taking much notice of it. I have a vomit phobia, so that was foremost in my mind!However, my last meeting with her before my first chemotherapy session, I asked if I would lose my hair. She replied that I would lose a good amount with Flourouracil, Epirubicin cyclophosphamide (FEC) for the first three sessions adding that whatever hair was left would come out when I had the taxotere drug for the last three sessions. I then asked if I could use the ‘cold/ice cap’ hoping this would enable me not to lose my hair. I remember her reply as if it was yesterday. ‘It doesn’t work well with Taxotere so it’s not an option for you, but don’t worry, it will all grow back when your treatment is finished.’ And that was it.Periscope Group: Knowing now how important informed consent is, what advice would you give women facing this same decision/experience?SA Ledlie: I believe very strongly, indeed, in informed consent. That has been at the heart of my campaigning for the last eleven years. As a patient you’re required to give informed consent for your treatment. How can you do this when possible life-changing side effects are not given to you? I would never advise anyone not to have this drug. It has to be the patient’s decision, but they must be told about the very real possibility of this side effect and not told it’s rare. I would advise any woman that’s about to start treatment to do her own investigation. Join forums and support groups for her illness or treatment, ask questions, be as thorough as she can. Download the fruits of her labour and take them to her doctor and never be fobbed off when they tell her not to read or believe information from the internet. Because of lack of transparency and disclosure we are being forced into taking this action. You need to be ‘patient savvy.’ Never feel guilty about questioning the experts!Periscope Group: What questions would you ask again if you could go back and do it over?SA Ledlie:This is a difficult question to answer. Hindsight is a wonderful thing.Firstly I would ask if this drug or combination regime was ‘off-label’ and whether there are any other drugs that are as efficient. If there are then the next question would be ‘why are you not offering me the other drug?’If the cold/ice cap wasn’t an option I would scrutinise my oncologist as to why she thought it wouldn’t work and what studies she was basing her statement on (which I would then look up, especially as it was a new drug regime.) I would ask her if anyone had not regrown their hair!And very importantly I would ask her if they received any money or gifts from Sanofi-Aventis to push this drug.Periscope Group: How does having permanent alopecia make you feel and how has it affected your life? Tell us your story.SA Ledlie:Living with permanent alopecia has been tough. When my oncologist told me that they had contacted the drug company and they said they were sorry it had happened and that it was very rare, it didn’t take me long to discover that it was actually happening frequently. This prompted me and another lady who had the same issue to start a support group and look for others with the same ‘rare’ side effect. It wasn’t long before our global membership was showing that this side effect was anything but rare. There is no cure, no magic potion; you have to try to find a way to deal with it. I feel that it has robbed me of the first seven precious years of my remission. I was supposed to be getting on with my ‘new normal’ life. Instead I found myself wrapped up in finding a cure, fighting the drug company and oncologists.But most importantly, I was fighting the acceptance of this disfiguration. I didn’t want to accept it; I didn’t want to like it. It was ugly and I felt that I looked like a man with male pattern baldness. I had lost all my femininity, my personality and I hated them all for it. It was impossible to see how I could possibly live a life with it. All this obsession and anger put my family through hell. It was relentless. Of course there are all the practical everyday problems that occur: hot itchy uncomfortable wigs, frightened you will lose your wig in anything more than a slight breeze, if you take part in sports it’s a dilemma, you can’t just take the rubbish out or answer the doorbell without putting something on your head. Your life is no longer spontaneous; every moment has to be thought through. Of course at the end of each day you stand in front of your mirror and take your wig/hat/scarf off and there’s a cancer sufferer staring back.After living like this for seven years, I wrote a memoir about my journey Naked in the Wind – chemo, hair loss and deceit. This was going to be the final act of my crusade. However, things didn’t quite go to plan! After my book was published I started to receive emails from readers: women that had suffered from the same side effect and needed support and guidance, breast cancer patients that were just about to start receiving Taxotere, and family members of sufferers that needed advice in how they could help their loved ones. Receiving these emails I realised my campaigning had just begun!
Are you facing a breast cancer diagnosis? Before starting any chemotherapy regimen, learn about the potential adverse effects of Taxotere, such as permanent hair loss. Interested in learning more about Periscope Group? We are advocates for the injured, and believe patients facing tough situations deserve the truth about drugs, drug manufacturers, and the potential adverse and side effects of medical devices. Click here to learn how we help patients get justice in the face of faulty drugs, or medical devices.
