Bald Women Lash Out At Sanofi-Aventis & Taxotere
15 CommentsBy Ed Silverman // March 8th, 2010 // 9:04 am
For every action, there is a reaction. In this case, a group of women are angry the Taxotere breast cancer med has not only left them permanently bald and looking sick long after they were treated for the disease, but the warning was insufficient. Calling themselves taxotears, several have formed a group - A Head of Our Time - to demand more patient education.
‘A Head of Our Time is a world-wide organization of “baldies” who have banded together to share emotional support, compare medical research and educate our health care providers. If you are tired of the stares and the dismissive suggestions to “wear a wig”, you will find understanding and, indeed, empowerment among us,’ according to their web site. At least one has also posted photos on what resembles is a the Sanofi-Aventis Facebook page (see here, UPDATE: but is actually not legit).
“I had a normal head of hair and I am now completely bald,” Cynthia MacGregor, 50, of Montreal, who has been diagnosed with alopecia universalis, a loss of all body hair, tells The Globe & Mail. “It’s devastating. With no hair, there is no going back to normal.”
An oncologist from France, Hugues Bourgeois, who presented research on 82 patients with persistent alopecia at the San Antonio Breast Cancer symposium this winter, tells the paper that not all cancer doctors warn patients about this possible side effect. Actually, the prescribing info does warn that “loss of hair occurs in most patients…and varies from patient to patient.” But then adds, “once you have completed all your treatments, hair generally grows back,” and suggests patients ask a doctor or nurse for referrals to stores that sell wigs, hairpieces and turbans.
John mack
You should have taken a screen shot of that Facebook page — it’s no longer available! :-(
Ed Silverman
Hi John,
Hmm…. Not sure if we’re looking in the same place. I just found it here…
http://www.facebook.com/#!/sanofiaventis0?ref=search&sid=660463687.2358240321..1
Look under ‘Photos.’
Best
ed
Lisa Van Syckel
Sore loosers, thats ok, I will post it on my facebook page!
Lisa Van Syckel
Ed, When I hit the link, it brings me to my facebook page????
Condor
Try this link — I think Ed’s was broken.
Namaste
Justice in MI
I will admit the “hat tip” reference kind of jarred me…
John
Ed,
I”m a little confused on this one, is the group saying that they would not have treated their breast cancer if they knew they might suffer permanent hair loss? Or did I miss something?
Thnx,
John
Lisa Van Syckel
John,… There are other breast Cancer treatments out there, so women do have other choices. So give them, the good, the bad, and the ugly and allow them to “choose”, the course of treatment, that they believe, would best suit their personal needs,.. yes?
Ed Silverman
Hi John,
From what I gather, the group wants more info disclosed about the risk of permanent hair loss from Taxotere. The story in the Globe & Mail quotes a doctor saying that he offers both Taxol and Taxotere to patients, although one apparently has a higher risk of permanent hair loss than the other. The women believe this sort of contrast isn’t fully or properly explained often enough. I’ve no idea how many, if any would decline treatment for breast cancer though.
I hope that helps,
ed
Jonathan Richman
To add some additional complexity, this almost certainly is not an official sanofi-aventis Facebook page. A few give aways here, but the biggest is that they don’t use the proper branding for the company. It’s “sanofi-aventis” and the page is “Sanofi aventis” with a capital “S” and no dash. There’s no way someone in S-A signed off on this page.
Question is…now what? Do you complain to Facebook, which would get the page deleted almost instantly or do you respond? I’d clearly go for the former. Not perfect social media participation, but there are bigger legal implications to allowing people to use your trademarks and pose as an official company representative.
Jonathan
Dose of Digital
John
Thanks Ed, I understand the issue better now.
John
Thx Lisa also, did not see your note at first.
Thea Chassin
Bald Girls Do Lunch at baldgirlsdolunch.org is the award winning nonprofit created by a woman with alopecia universalis for the millions with various forms of alopecia areata (the autoimmune hair loss disease). We know very well the shock and mourning loss that women go through when suffering a drastic change to self-image. We also know, since many of us either lost all our body hair (everywhere) in childhood or during teen years (AA can come at any time of life)that life without hair is an opportunity for enriched self awareness, beauty, values and standards. We know firsthand that successful life, love, relationships and sexuality having little to do with hair.
Living in a culture that’s obsessed with hair as a prime measure of confidence, beauty and femininity means that us hair less women need to work harder to feel normal and whole especially losing eyebrows and eyelashes. On the plus side, think of the cost and pain women endure to remove all their hair below the neck!
The sense of body loss, loss of control and not seeing our old selves looking back at us in the mirror is a real feeling. It’s a process to evolve and adapt to a new version of ourselves…but every woman can do it with grace and style. She has to do it because no one else is going to do it for her.
Just ask the women of Bald Girls Do Lunch….many of whom became alopecians in elem, middle, high school or college. The grieving stages and anger are normal. But when that’s over, look around at the bald, healthy children and adults today who have autoimmune alopecias. It helps puts the loss from drug-induced alopecia in perspective and that gets women back in the driver’s seat of their own self-image faster.
Friends and family mean well and say “it’s only hair”. So find other women to talk to and the feelings of being alone alopecia will dissipate.
Thea Chassin, founder and president
Bald Girls Do Lunch Inc
http://www.baldgirlsdolunch.org
info@baldgirlsdolunch.org
shirley
With all due respect Thea, its a totally different ball game when its related to cancer!
Denise
Thea, I believe you are missing the point. This has much less to do with permanent alopecia, than it does with non-disclosure by a greedy industry giant. Sanofi-aventis was issued a warning from the FDA nearly a year ago which states they are guilty of “Unsubtantiated Superiority Claims/Overstatement of Efficacy”. This is after the FDA investigated numerous trials and studies. In short, this means SA misreprented clinical trial data, to promote their drug, now why would they do that? Oh yea, kaching!!! Consequently I was treated with, not only an inferior drug, but one that left me permanently disfigured. They continue to pedal their drugs without disclosing this information and it is no only inexcusable, but in my opinion, criminal.