Shirley and Sanofi-Aventis: Facing off on Facebook

As part of my campaign to make patients aware that the chemotherapy drug, Taxotere, has been linked to permanent baldness–and that it might not just be temporary as I was told–I started writing letters to Sanofi-Aventis, the manufacturer of the drug. I wanted to see if they would cover the costs of my wigs for life. They said they were sorry, but they weren’t going to do anything. Then they didn’t reply to any more of my letters. So I posted photos of my ugly bald head on their Facebook page. Still no answer. So I kept posting. Then they shut down their page. Still no word.

But word travels fast in this digital age. Now the bloggers are abuzz and the Tweets are aTwitter. The rest, as they say, is history:

Pharma Social Media for Dummies
The Balding Blog: Permanent Hair Loss from Cancer Drug Taxotere
Bnet.com: Sanofi’s Latest Challenge
Bnet.com: Sanofi, European Regulators to Bald Breast Cancer Patients: Drop Dead
Pharma Marketing Blog: Patient Unadvocate Lays Siege to Sanofi
Pharma Marketing Blog: Disgruntled Patients Shuts Down Sanofi-Aventis Facebook Page
MedAdNews Insider: Sanofi-Aventis Social Media Mess
Siren Song: Online Reputation is Essential: Sanofi-Aventis Fake Facebook Page Has 3,783 Fans
Trusted MD: Sanofi-Aventis Feels the Social Media Pain
Mark Blevis: Sanofi-Aventis Missed its Tylenol Moment
Extrovertic

Shirley: The Taxoterrorist

I was a healthy 47-year-old woman… or so I thought. I had never been overweight, always ate healthy and swam four times a week. I didn’t smoke. No cancer in the family. How could I possibly get breast cancer?!

Finding the lump in my breast was a massive shock—it moved around and hurt. In cases like that, they often tell you it’s not cancer. Well mine was! I had a lumpectomy, chemo FEC X 3, followed by Taxotere X 3. Then radiotherapy and Tamoxifen.

Each time I went for follow-up appointments with my doctors, I’d pull my scarf off my head and ask “It’s not growing very fast is it?” My questions were always answered with puzzled looks.

At my six-month check-up they delivered the final blow. “We’ve contacted Sanofi-Aventis, the manufacturer of Taxotere,” they said. “I’m sorry to say that your hair will never return. Your hair loss is permanent.”

I didn’t believe them. I was in shock. This can’t be, I thought. I was told my hair would return. Four years later I can say they were right.

For the past three years, I’ve worked tirelessly to be heard: by my doctors, by health regulatory bodies and by Sanofi-Aventis. I soon realized that I wasn’t the only one… or the third… or fourth person in the world with this bizarre side effect.

I have e-mailed my medical team every week for information and support. After all, they gave the drug, so the least they can do is to help me get to the bottom of this.

I wrote to Sanofi-Aventis. They said they were sorry, then to add insult to injury, said that it’s very rare for Taxotere to make patients permanently bald. From that day forward, my life mission has been to find out how rare persistent chemo-induced alopecia actually is.

The dismissals and cover-ups that have emerged have only spurred me on. I was denied the chance to make my own risk assessment. It was my right as a patient to understand my treatment and to agree to it or not.

I am fearless in my quest to ensure that every woman is offered a choice when they are offered Taxotere as part of her chemotherapy regimen. I won’t stop until every woman knows the truth… and every woman has a choice—the choice I was denied.