June 29, 2017 San Diego CA — Today we are pleased to have a new guest blogger Shirley Ledlie, who has written a book and created a Taxotere support group for women who have suffered hair loss.
She is sharing her personal story about her fight with breast cancer and her use of the chemotherapy drug called Taxotere. It’s a powerful story. Feel free to share this!
Cancer has touched most of us, at some point in our lives, either in our own diagnoses or that of a loved one.
For those of us who have battled this terrible disease, we remember only too well that dreadful appointment that confirms our fears. The numbness, the room spinning and the instant deafness that we experience will always stay with us; hopefully fading deep into the background as we get on with our lives. And if we are one of the lucky ones that are expected to go into remission at the end of our treatment, well, we grab that with both hands!
When we accompany a loved one, different emotions are experienced but you have to put on a brave face for their sake and you suddenly become their voice.
The ‘cancer world’ is undoubtedly a very scary place, no matter what side of the cancer story you’re on.
Then there is our medical team that we have to place all our trust in. Our lives are in their hands aren’t they? What happens when something doesn’t go according to plan?
My story of breast cancer and Taxotere:
After I was diagnosed with breast cancer and given my treatment plan I was so thankful to have such a good medical team behind me. I had my surgery and was about to start my chemotherapy treatment. I had previously watched a television programme about a cancer patient having the ‘ice cap’ or ‘cold cap’ so I asked about its availability, hoping this would enable me to hang onto my hair.
My doctor informed me it didn’t work with my prescribed chemo drug Taxotere so wasn’t an option for me, but ‘don’t worry your hair will grow back when the chemotherapy has finished.’ Unbeknown to me those words would come back to haunt me.
“My Hair never grew back after Taxotere”
My hair did not grow back; some did around the sides and back but not much on top. My oncologist told me that he’d spoken to Sanofi Aventis and they said they were sorry, it does happen very rarely and it’s permanent. Apparently I was the third or fourth woman in the world this had happened to.
I felt like a freak! Feeling devastated and angry about the whole ‘male pattern baldness’ nightmare, I decided to search for the other women. It didn’t take me long to find the first one, Pam. We decided to start a support group, because it was our belief there were plenty more permanently disfigured women out there. Our thoughts sadly proved to be correct. There was a constant stream of ‘freaks’ joining our support group; our own private club, with a life-time membership.
There are thousands of women worldwide that have been affected this way with Taxotere, and for whatever reason, the oncologists are still in denial about it, even dismissing it as a rare incident when various studies prove it to be ‘common and frequent’.
Some might say that it’s better to have not much hair than lose your life.
Another options for breast cancer treatment – Taxol
Firstly, we are all very grateful to be alive; that’s not the issue here. Nor should it have been that choice. There is another drug, Taxol, that’s equally if not more effective than Taxotere which doesn’t have this problem but doctors are reluctant to offer this drug. Secondly, women should be informed about the very real possibility of this happening to them. It’s about quality of life and you have a right, as a patient, to be warned. You have to give informed consent for your treatment, but how can you do that when life-changing side effects are kept from you?
Get the Support you need – Taxotere Support Group
The women in our support group http://aheadofourtime.org/ have been informing the drug company for over ten years but they constantly ignored us, wanting us to shut up. The group members in the US have been complaining to the FDA for more than ten years. And finally oncologists have not been reporting individual cases, which they are obliged to do.
If it has happened to you, I’m so sorry. The only way to stop it happening to others is to make sure all doctors report it to the relevant medical bodies, whichever country you are in. Check they have done it! It’s not a case of being ungrateful for your treatment. Please don’t feel that. And just remember that the drug company knew about this many, many years ago. They wanted us to shut up and go away, which won’t happen until the industry acknowledges this issue and ensures all patients are warned of the potential consequences of this drug.
Visit our Taxotere Support Group: http://aheadofourtime.org/
Read the whole story in my book, available on Amazon:
Naked in the Wind: Chemo, Hair loss and Deceit. https://www.amazon.com/Naked-Wind-Chemo-Hairloss-Deceit/dp/1500136549/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1498747199&sr=8-1
If you or someone you love has suffered from hair loss from Taxotere, you have rights! We intend to hold Sanofi Aventis responsible! Contact us today to learn about how we can help get you the compensation for your hair loss.
Read more on the Taxotere lawsuit here.