All Trumped Up

I am forever grateful to have survived cancer. This blog article is simply to raise awareness about chemotherapy and permanent hair loss (alopecia).

I’ve read and heard comments from people that permanent hair loss is not a big deal; that I should be lucky to be alive. Yes, I am forever blessed that I am indeed alive. But the accusation that being alive trumps my right to express my displeasure that I am bald is all trumped up! Baldness is a big deal, not just to myself, but also to society as a whole. Go online and search Donald Trump and the word wig or hair. The endless focus and stories surrounding his hairline say it all. I have strong empathy for men out there who deal with male pattern baldness.

Baldness is accepted by our society at times. Macho athletes now shave their heads and it’s cool. It’s a start. But the baldness of the president-elect of the United States is not accepted. And female baldness is certainly not accepted. There is acceptance for those undergoing chemotherapy. Our society has empathy for brothers and sisters who share in this fight. But then, permanent baldness is another story. If a woman has male-pattern baldness, she is considered unfeminine. If a woman has alopecia, she is stared at like a freak show. Or, she is mistakenly assumed to be a cancer patient.

Don’t get me wrong; there is nothing wrong with being a strong cancer patient fighting for his/her life. But who wants to be labeled for life as something that they are not?Unfortunately, this ugly disease does result in people fighting cancer for the rest of their lives. I’m not belittling the struggles that others face daily that are even more difficult than permanent baldness. I’m discussing this issue only because recent news tells me that it could have been avoided. It is that fact that makes all the difference.

There are two drugs, Taxol and Taxotere, which have similar outcomes and side effects. But Taxol does not have the significant long-term side effect of permanent hair loss. Taxotere is made by a drug company that has overtaken the market share of this multi-billion-dollar-a-year industry. And the reason women all over the country are upset is that there is alleged fraudulent behavior. Wouldn’t you be upset if permanent baldness could have been avoided?

Each of the women I met along my journey through cancer treatments had a vibrant, interesting life before cancer. I did. And want to be known for who I am not for what disease I had. Having little hair on my head is a neon billboard that says, “I’m fighting cancer” or “I’m not feminine.” I am much more than either of those labels.

I’m not going to lie. When I read that the chemotherapy cocktail I was given had de-womanizing effects, I wanted to throw up. But news of the cause of my lifelong, hair-loss hangover was a relief for my husband and me: “Phew! I’m not a freak. There is a reason for this baldness.” Even I, a bald woman, share society’s viewpoint that female baldness is not acceptable, unless there is a temporary medical reason.

But this medical impact is permanent and comes with permanent impacts. For one, breast reconstruction surgery was not recommended for me because the doctors were unsure if I had an autoimmune disorder. The alopecia was a major factor in that. We didn’t know why I had alopecia. And even though I didn’t test with the typical blood test markers for an autoimmune disease, it was clear my body was rejecting my hair follicles. To the doctors and me, alopecia was an outward sign of something inward that wasn’t working properly. And we feared that my body would reject a breast implant as well.

Over nine years have passed, and many bad emotions have turned to joy as I watch other women conquer this complex curse called cancer. Time heals some wounds. And love is a cure for much. But, hiding my baldness is an ever-present chore. I was in my thirties when diagnosed, and I have a long life yet to live.

So I am indeed concerned that these doctors, who held my life in their hands, were not given the proper information from the drug distributors about the long-term impact. I have no doubt that, had I been told that Taxotere had a chance of permanent baldness, I would have selected Taxol. I know this because I have notes asking four different doctors the difference between the two. And I was told that the main difference was the inconvenience of getting the Taxol more often. This inconvenience is nothing compared to forty years of wearing a hot, itchy wig. A wig that often has a mind of its own, especially in the wind.

Some may think, “What is the big deal? There are side effects of these drugs that include a secondary cancer. I don’t hear people complaining about that.” The difference is that I knew of that risk and decided on that risk. The difference is that I made choices based on the information given. Choice. Choice is what makes us human, male or female. Is it possible that most women, not just me, might have chosen Taxol over Taxotere?

 

Christine: This is not as easy as people think

Before chemo with Taxotere

Those of us who have experienced chemotherapy for breast cancer can no doubt recall all too well, the horror of the loss of our hair.  For most women, this initial distress gives way to eventual acceptance, because we take comfort from our doctors telling us that our hair will soon grow back. Sometimes there is even curiosity about colour and texture, and a certain eagerness present, waiting for that familiar fuzz to appear, signaling the start of a new head of hair.

Or so it seems.

For a small minority of women, (although the research has shown that numbers are increasing), their hair only partially regrows and is extremely thin, or worse still, does not regrow at all, leaving the woman completely bald. A quick look at this website is very revealing.

I was in the former category. I waited patiently for my hair to return and the weeks went by with evidence of some very modest growth, and I told myself that my hair was particularly slow to return. At the same time however, I had a gnawing feeling that something might be wrong. My fears were realized when I attended an exercise group for survivors over a few weeks and began comparing my hair to that of the other group members. Mine was so sparse in comparison to the other women and I was further along in terms of time since the end of chemo (about a year in fact).

I will never forget leaving the dermatologist’s rooms after being told that my lack of hair growth was due to my particular cocktail of chemo drugs, the likely culprit being Taxotere. I was utterly devastated as I felt I had lost my femininity and aged another 20 years, all at once. It was so much worse than losing a breast to cancer, because that could be fixed – I had undergone a reconstruction. Not for a second was I not grateful to be alive, but I thought it so unfair that I did not look the same as I did before the cancer tsunami struck. Looking in the mirror every day is a constant reminder of what I have been through.

After chemotherapy

I used to love going to the hairdresser for a blowave, as this was my special treat for myself. Now, I avoid going anywhere near hairdressers because of my acute embarrassment.

It is now 4½ years since chemo took away my hair. After crying many tears, I have slowly begun the process of accepting the situation, but remain hopeful that there will be a remedy out there somewhere, soon. I have had some significant success through taking Minoxidil, which is the oral version of Rogaine, the product balding men use. I feel resentful about having to take yet another drug, to help with a problem that never should have happened. I will need to be on this drug for life as if I stop, my hair will fall out again.

I wear wigs at times and most often hairpieces in the winter as my head gets a lot colder than it used to. This is not as easy as people think. Anyone who has worn a wig in the summer will tell you it’s hot and uncomfortable. I can now wear my hair in a ponytail, but need to comb it just the right way to avoid exposing my scalp in the very thin areas.

To make matters worse, some doctors tell me my thin hair is hormonal and is a result of the menopause. I had a full head of lovely thick hair prior to chemo and it is simply nonsense to attribute this vast change in my hair’s volume to hormonal changes. I know it is not the case.

Yes, one’s hair is not one’s life, but I never realised how much a part of one’s identity as a woman it was, until I lost it.

Christine (Australia)

Taxotears Turns Ten

Later this year will be a bittersweet celebration for myself and many ladies from around the world. Bitter because it marks the anniversary of the birth of a highly successful support group that I have been involved with from the first day.

Ten years ago I found myself in a situation that not only shook me to my core, but also left me with the need to track down others that had been disfigured like myself. What was this disfiguration? The year before I had been given a chemotherapy drug, Taxotere, as part of my treatment for breast cancer. Instead of my hair growing back, as I was told it would, I remained looking like an orangutan—an ugly freak. My doctor told me that the drug company, Sanofi-Aventis, had informed him I was only the third or fourth person in the world that this has happened to! So there must be two or three others out there somewhere, and I vowed to track them down. I hadn’t banked on it being so easy.

The first lady I found was Pam, from Oklahoma, and we decided to find others and create a support group. Cynthia then joined us and she created a website for our group of monk look-a-likes. Little did we know in those early days, how successful the group would become in finding so many ladies. We are now a large, thriving global group, with a constant stream of new members. It’s a group none of use wanted to join and it comes with a lifetime membership.

Now on to the sweet bit.

This group is a safe place for all members, there’s nobody to judge us and accuse us of not being grateful for being alive, which happens to us constantly. These people hear us but do NOT listen to us. They don’t want to understand our message. So we know that when we lend a shoulder to cry on, sometimes just listen, tell our stories and share tips that nobody ‘gets it’ more than we do. What would we have done without this support group? I have no idea, but I do know it’s been an incredible help to us all. We might not be happy to be in this situation but we are sure as hell happy to have each other.

This week I was invited to be interviewed for a radio podcast show for “inspirational authors’ so I asked our members what the group meant to them. I would like to share some of their comments with you.

“This group has given me strength and courage.” — Pam

“This group means I’m not alone.” — Chrissy

“Ladies understand how I feel when no one else does.” — Susan

“I’m not a freak.” — Erica

“This group has taken me from a place of isolation and despair to a place of understanding, validation and most of all hope.” — Suzanne

These are just a few of the comments I received.

I will end this blog on that sweet note, not only sweet because of how we feel about our support group but because it’s a good excuse to have another slice of cake!
Happy birthday to the amazing ‘Taxotears’ group!

Michelle: The inconvenient truth

If you were told that you needed to have chemotherapy to combat cancer, what is the first thing that would most likely come to mind? After the initial shock of the diagnosis, you would most likely be ready to fight the disease with everything that modern medicine has to offer. You would know that chemotherapy would most probably cause you to lose your hair, but conventional wisdom says that after treatment, your hair would grow back thicker, stronger, and more beautiful than ever. Right? Wrong! There are many of us who, after treatment, much to our horror, learned that we would be permanently bald. This is a disfigurement that in this era of modern medicine is not only devastating, but totally unacceptable.

My last haircut

My last haircut

My journey with chemotherapy induced permanent alopecia started three years ago. Once I finished treatment for Stage 2 invasive ductile breast cancer, I eagerly anticipated the regrowth of my hair. I was ready to ditch the wigs, and the scarves and buffs and reclaim what cancer took from me. Each day I would watch for sprouting hair, but it seemed slow in coming. A new head of hair was the prize I had earned after following the treatment protocol. Chemotherapy zapped me of my energy, the double mastectomy took my breasts, the radiation caused burning and scarring, and due to an anomaly in my genetic structure, the hysterectomy that followed caused hot flashes and weight gain. These were byproducts of the cancer treatment that I anticipated. I did not anticipate that years out of treatment I would be left with fine wisps of hair that grew in clumps around my head, but offered no coverage and no relief from the wigs and scarves that I had been wearing during the treatment. The painful reality is that I will forever look like a cancer patient.

The depression that this threw me into was unreal. A college freshman carelessly tossing her hair in front of me, a random shampoo commercial during my favorite television show, the drive home from work that takes me past my former hairstylist’s salon, or the sight of my blow dryer and hair straightener stored in my bathroom collecting dust are all everyday occurrences that bring me to my knees. I wasn’t prepared for this, I wasn’t told that this was a possible side effect of chemotherapy, and I wasn’t given a chance to make this decision for myself. There are many options in cancer treatment, and although I know that I am blessed that my cancer was halted, it came at a high cost. Had I known that there was the slightest chance that I would be permanently disfigured by the treatment, I would have paused and explored other options. Ultimately I may have opted to go with the treatment that I was given, but I had a right to be given all of the facts.

There are many people who hear my story and callously remark that I look just fine in my wig. Though that may be the case, it is not possible, nor comfortable to wear a wig all the time every day. I have also learned through experience that there are many things that simply can’t be done in a wig. You can’t ride a roller coaster or go to a water park with your kids in a wig. You can’t exercise vigorously or ride a bike on a trail. You can’t hold a squirmy baby or hug a friend too tightly because your wig will slip. Convertible car rides are out and you can no longer ride on the bow of a boat with your hair flying in the wind. You can’t wear a wig on the beach or ride a jet ski, and your head is always hot in the summertime. Trying on clothes with a wig is impossible and you can’t walk outside on a windy day without holding on to your wig; if it is raining and you have to hold an umbrella as well, it is nearly impossible. You can’t dive into a pool or walk through the woods in a wig. You can’t be intimate with your husband in a wig. Braiding your hair, wearing a ponytail, or tucking your hair behind your ears can’t be done in wig. When I am in situations where I can’t wear my wig, I am forever explaining my situation to friends and strangers alike. “No, my cancer hasn’t returned, I’m just bald.”

All of these things I have experienced firsthand. My new identity is a woman gripped by the physical and emotional horrors of chemotherapy-induced alopecia. If this is my cross to bear, I will bear it gladly, but I will not go quietly. The drug companies owe us answers. Cancer treatment is a billion dollar a year industry. Woman who are given chemotherapy deserve to know that this side effect is a real and possible reality. We can’t continue to be stripped of everything that makes us a woman all in the name of cancer treatment. We are an inconvenient truth and we deserve to be heard.

My new hairstyle

My new hairstyle

Kathy: So Much Loss

When I was 39, I was diagnosed with a Grade III infiltrating duct carcinoma. It was a couple of weeks after my daughter had spinal surgery, and I was so in shock, I just did everything that was recommended to me. I assumed that the doctors knew everything, and would do only what was absolutely necessary to save my life so that I could care for my family.

I had a lumpectomy, and a second surgery was performed because the edges were not clear. Some of my lymph nodes were also removed. I had CEF chemotherapy (Cyclophosphamide, Epirubicin Fluorouracil) for six months, and it was not long before just looking at a Cyclophosphamide pill made me gag, and I could hardly force myself to put the pill into my mouth and swallow it.

I had a port implanted under my skin near my collarbone, and I hated it. I hated seeing it there, along with my bald head. I had sixteen radiation treatments after that, and by the time I went away for my anniversary three months later, my head was covered with a dark bristly brush cut, which I also hated because I have always worn my hair long.

It felt so delicious when spring came, and I could remove my winter cap and the wind blew through my hair because it had grown some.

It felt WONDERFUL!

Five years later…

I was feeling rather confident that that was the end of the cancer, when a lump returned in the same breast.

This time the surgeon said that a mastectomy was the only option. So, I had that done, and then four treatments with Taxotere. I was thinking that it would be a breeze because the treatments were going to be finished in only two months, and by the end of six months I was going to have a full head of hair again. I last saw my hair in all its glory in 2006, and I have regretted hearing of Taxotere ever since.

With my very first treatment, I had severe pain in my hip, and my hands turned red. Soon I had a pimply rash on my head, and my nails all started to peel off my fingers halfway down. My nails have grown back, but they don’t feel right. What little hair I do have is so sparse and wispy that I have to wear a hat at all times.

My left eye tears often, I assume from the tear duct scarring, and my eyes are very dry. It is funny that I can have a puddle in the corner of my eye from time to time, but it is generally very dry. Ironic…because I have never stopped shedding Taxotears.

My Hair or My Life?

Choice

Ever since a story in The Globe and Mail linked the chemotherapy drug Taxotere to irreversible hair loss, some have tried to turn it into a “my-hair-or-my-life” debate. This is just hair-raising hyperbole and a blatant disregard for the facts.

Why are we splitting hairs with a bunch of bald ladies? After nearly a year of surgery, chemotherapy and radiation, they just want to return to some kind of normal. Instead, they’re diagnosed with the boobie prize of side effects: alopecia, or long-term hair loss, a medical condition in its own right. And all because no one bothered to tell them that Taxotere can cause irreversible hair loss in 3 to 6.3% of patients administered the drug.

None of these women’s lives were in imminent danger. They were all given a positive prognosis and every reason to believe that their lives would return to some kind of normal. This, in large part, is due to more advanced diagnostics, treatment and medications. Along with this, it stands to reason, should come more information about their treatment options.

Let’s keep our eye on the real issue. This is not about vanity. It’s about a patient’s right to make informed choices about their treatment, it’s about a drug that has raised a red flag at the Food and Drug Administration (FDA) and it’s about a drug company that has a history of obscuring the facts.

In April 2009, the FDA issued a warning letter to Sanofi-Aventis, one of the largest pharmaceutical companies in the world, for a reprint carrier citing a study in the Journal of Oncology. The study compared the efficacy of Taxotere and Taxol, the trade name for paclitaxel, in treating locally advanced and metastatic breast cancer.

According to the FDA, the reprint was “false or misleading because it presents unsubstantiated superiority claims and overstates the efficacy of Taxotere.”

In its warning, the FDA stated that it is “not aware of substantial evidence or substantial clinical experience to support the claims made in the carrier regarding Taxotere’s level of efficacy or superiority to paclitaxel.”

Indeed, a study in the New England Journal of Medicine compared the efficacy of the two drugs. It concluded that women who received Taxotere every three weeks had “better disease-free survival,” but women who received Taxol each week “lived longer overall.” Taxotere/Taxol. Tomato/Tomato. Except for that hair thing no one wants to mention.

This is not the first time that Sanofi-Aventis has gotten a slap on the wrist. In 2007, Aventis paid more than $190 million to the U.S. Government to settle drug pricing fraud. The drug manufacturer agreed to settle False Claims Act allegations concerning its pricing and marketing of Anzemet, an antiemetic drug used primarily in conjunction with oncology and radiation treatment to prevent nausea and vomiting.

The government alleged that the pharmaceutical company engaged in a scheme to set and maintain fraudulent and inflated prices for Anzemet knowing that federal health care programs established reimbursement rates based on those prices.

“Marketing drugs to doctors based on potential profits undermines confidence in the integrity of our health care system because it treats beneficiaries like commodities instead of patients,” said Assistant Attorney General Peter D. Keisler.

Once again, with Taxotere, patients feel like they are being treated like a commodity. In this case, a group of breast cancer patients who feel like they are unwitting guinea pigs in a science experiment gone wrong.

“Everything has been loss,” one woman wrote A Head of Our Time. A lost breast, sleep, memory. The friends who flee when they hear the word “cancer”. And then the final insult: hair.

Then there’s all the things you gain: painful scar tissue and lymphedema—swelling in the arm or hand caused by lymph fluid buildup—, a compromised immune system, weight. But they’re lucky to be alive say detractors.

No one can understand the hair-or-my life dilemma better than my friend Jem: she has Stage IV breast cancer. As the mother of two small children, she wanted to know all the side effects of her cancer drugs before she began treatment. After all, she has to answer questions like “Mommy, why are you bald? Mommy, why are you so tired?”

Told it was Temporary

Jem and I did our homework and neither of us found anything in any consumer literature or cancer website indicating that hair loss could be permanent. Just the reassuring word “temporary”. MacMillan Cancer Support, which bills itself as a source of support and a force for change in all things cancer, states on its website that hair loss is “temporary and all your hair will grow again once treatment ends”.

The Taxotere product monograph states that “Hair loss may happen shortly after treatment has begun. However, your hair should grow back once you’ve finished treatment.” “Should”—a little word to gloss over the truth. And one that can be easily overlooked in the shock of diagnosis and the myriad decisions to make.

Despite the daunting list of possible side effects, we made a decision to trust the drugs our oncologist prescribed and took the leap of faith. The last thing the chemo nurse said to me before plunging the IV needle into my hand for my first treatment was “Chemo drugs are stupid. They kill everything, not just the cancer.”

This spoken by a man wearing full biohazard armour to prevent third-degree burns from administering the potentially lethal drugs.

He plunged. Then I waited. Two weeks later, my hair fell out, right on schedule. I did my best to Own the Chrome, throwing a head-shaving party and wearing wacky wigs. After all, I was told, it was just temporary.

“I wasn’t freaked out when I lost my hair because I was told it would grow back,” another woman wrote. “I was ready for the adventure of seeing how it would be. I wasn’t prepared for looking like the “Crypt Keeper” for life. It’s more than just being bald, it’s a constant reminder of cancer.”

She’s not alone.

“The one side effect possibly most dreaded by the patient is alopecia,” wrote Dr. Scot Sedlacek, an oncologist at the Rocky Mountain Cancer Center in Denver, Colorado. “Yet, we have always told our female patients don’t worry, [hair] will always come back. This last statement may not be true,” he writes.

His landmark study on the effects of Taxotere and irreversible hair loss found that 6.3% of study participants experienced Persistent Significant Alopecia—hair re-growth less than 50% of the pre-chemotherapy amount—up to seven years after Taxotere was administered in combination with Adriamycin (doxorubicin) and Cyclophosphamide.

“Such an emotionally devastating long-term toxicity… must be taken into account when deciding on adjuvant chemotherapy programs in women who likely will be cured of their breast cancer,” it recommends.

My Hair or My Quality of Life?

French oncologist Hugues Bourgeois took it into account, presenting research on 82 patients with long-term persistent alopecia to the prestigious 2009 San Antonio Breast Cancer Symposium in December. In his medical practice, Bourgeois gives his patients a choice of Taxol, an equally effective option to Taxotere, but with no known risk of irreversible hair loss.

Perhaps the question would be better phrased, my hair or my quality of life?

If the emotional toll of hair loss seems trivial, how about the financial cost of wearing wigs, painting on eyebrows and gluing on eyelashes for life? There are financial aide programs to offset the cost of temporary chemo-induced hair loss. None for permanent. That cost, too, must be borne by the patient for life.

How about the loss of income due to lost image and lost self-esteem? I work in advertising and I can tell you that no agency wants a bald lady to spearhead their shampoo or hair colour campaign or a lashless lady to hock their long lash mascara. In this biz, you don’t just need to dress for success—you need to tress for success.

All this hair loss, psychological devastation and chemotherapy might not even be necessary. A new molecular test, recently reported by the Associated Press, analyzes 21 genes to help predict whether a woman really needs chemotherapy and whether a cancer is likely to return within the next decade. This could save health care systems untold amounts in “unnecessary treatment and save patients such gruelling side effects as nausea, nerve damage and hair loss,” it stated.

After the unexpected side effect of permanent hair loss, it’s surprisingly difficult to go forward. “Are you cured?” everyone asks, long after the end of my treatment. My bald head and absent brows and lashes give me an unsettling “terminal” look, like having a scarlet “C” stamped on my forehead.

No doctor dares use the other C-word: cured. Who knows what rogue cancer cells are at work? The reality is that many women are living to have breast cancer multiple times, making it more like a chronic disease. A very profitable one.

“Cancer is big business,” my pharmacist said when I commented on the cost of my cancer drugs. “And they’re not in any hurry to find a cure.”

In Breast Cancer: Poisons, Profits and Preventions, a report on the big business of breast cancer, investigative journalist Liane Clorfene-Casten concludes that as a result of a focus on cure, rather than prevention, the population has been brainwashed and businesses have quite literally gotten away with murder.

“Those who will profit,” Clorfene-Casten states, “include chemical companies that make not only the cancer-causing pesticides but also the chemotherapy drugs used to fight cancer. Others are major cancer research centers whose well-connected directors shape the national dialogue on cancer.”

According to Breast Cancer Action Montreal, more than 95% of funds raised by big events like the Run For The Cure are used to build, equip or update cancer treatment centers, leaving a pittance for research into the causes of breast cancer. Ironically, Sanofi-Aventis is a sponsor of this event, entitling them to lots of pink PR and some nice tax breaks.

One thing is for sure: a bunch of bald ladies aren’t good for their corporate image… or their bottom line. In this chirpy era of the corporatization of breast cancer and the cult of pink kitsch, it’s time to take off the rose-coloured glasses before we lace up our sneakers. If these breast cancer patients are being dismissed as vain, this does not bode well for health care consumers in general.

The Canadian Cancer Society trumpets on its website that “We believe that people with cancer must make treatment decisions with the best available information, including knowledge of what the treatment can do and what the side effects may be”.

Even if those side effects seem superficial. Cancer, after all, is not just a flesh wound and the long-term impact of treatment metastasizes throughout a so-called survivor’s life. A woman’s flowing locks are not just a celebrated sign of femininity, hair is a multi-billion dollar industry. So, how many women would choose Taxotere if they knew the facts?

Should these women just smile sweetly so more patients can be subject to the unwitting risk of irreversible hair loss? What about other patients with other undisclosed side effects? Should they take their medicine with a spoon full of sugar?

It’s cruel and unusual to split hairs with a bunch of bald ladies who just want to get on with their lives after breast cancer treatment. This is about much more than a bad hair day. It’s about health care consumers who must hold companies accountable for their actions.

To ignore it would not be vain. It would be dumb.

Photo: openhandweb.org

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.

Shorn of my Femininity

pink1

Breast cancer, I was determined, would not turn me into a frump. After all, “It’s better to look good than to feel good,” joked Billy Crystal as Fernando Lamos on Saturday Night Live.

I reigned in my mutinous cells with a co-ordinating, comfy recuperation wardrobe and coped with the “temporary” hair loss—so I was told—with wigs, scarves and beanies. Then, when my hair grew back a few months later, I’d gleefully burn them all in a bonfire.

Almost a year after my last round of chemotherapy, those wigs are getting ratty and my Lululemons look like baggy sweats. No sign of my hair anywhere. This is not normal, my doctors tell me. Hair normally returns four to six weeks after the end of chemotherapy.

“Are you bald everywhere?” my stunned oncologist asked, three months after the end of chemo.

He tried not to stare, but he was clearly perplexed.

“I AM NOT AN ANIMAL!!” I wanted to shriek.

“None,” I replied.

He continued undaunted, trying to console me with his mad-scientist knowledge of history.

“In ancient Egypt, the pharaohs couldn’t get excited unless the women were bald,” he added, oblivious to the irony of his snow-white pompadour.

In a panic, I went straight home and Googled. Within minutes, I found a group of women on the Internet who claimed that the drug, Taxotere, had left them permanently bald. I stared at the computer screen in disbelief: Taxotere was part of my chemo cocktail. For the first time in my cancer ordeal, I burst into tears. Great big shoulder-heaving, life-altering sobs.

Maybe I’m just a late bloomer. Maybe my follicles are just freaked out. “Your hair will come back,” my boyfriend consoles, kissing my melon like the Blarney Stone. Still, not one barbed-wire eyebrow has reappeared and I am getting nervous.

Now, instead of peering into the mirror to pluck out a wayward eyebrow or a “broken guitar string,” as one hairstylist dubbed my grey hair, I see a bald head and a rapidly sagging neck. On a bad day I see cancer. On a good day, I see a 100-year-old Galapagos turtle. An accidental glimpse in the mirror is enough to make me withdraw into my shell.

When people ask how I am, I know I’m supposed to smile and cheerily reply “fine”. Along with the depression and humiliation of being bald, comes the added burden of having to be chipper.

It’s hard to be honest with yourself when the well-coiffed try to console you by saying, “There are worse things than losing your hair” Or “Wear a wig.” This, as any wig wearer will attest, is like wearing a small furry animal on your head in July.

Though not as immediately dismissive, my friends are suffering from compassion fatigue. Compassion, like a statute of limitations, expired when I finished radiation. It’s time to get back to normal. As a good friend said, “I’ve got stuff too.” So I am forced to wonder out loud. How long can I continue to hope? Why does my dear dude stick around? And how do I relate to the world as a bald woman, stripped of the style that I thought defined me?

I say “thought” because there is nothing like cancer to challenge everything you had deemed important. Whoever said that cancer is a gift should be spanked. But that absurd statement does capture cancer’s one redeeming feature: an instant inability to sweat the small stuff.

So why is being bald such a big thing for a woman? As my surgeon told me, one of the first questions women about to undergo chemotherapy ask is, “Will I lose my hair?” Apparently, some women experience more depression over the prospect of losing their hair than over a cancer diagnosis—and some have even refused chemo to avoid hair loss. My health care providers did an admirable job of preparing me for the physical and psychological devastation of chemo, but we were all unprepared for my enduring baldness. No one saw this coming.

Some breast cancer “survivors” whose hair has returned are quick to thank the chemo they’re convinced kept them alive. Along with being bald and embarrassed, the follicly-endowed make me feel guilty and superficial. As a triathlon team-mate awkwardly tried to console, “No one cares if you’re bald.” She’s right in a way. We live in an increasingly narcissistic society–a weird sort of relief. That lady is too busy talking on her cell phone to care. That kid is too busy updating his Facebook page to notice.

Defining a New Sense of Self

But I do care that no one told me that chemo might leave me permanently bald. I could have been prepared. I could have made an informed choice. Not out of vanity, but out of the simple desire to make my own decisions. This is my life, not a game of Breast Cancer Barbie. Like some cosmic joke, I was stripped of my choice, my hair and my quality of life–no small indignity. Now, I’m supposed to be a good girl and keep quiet.

Sans cheveux, I am struggling to define a new sense of self. We live in a culture in which hair is the crowning glory of one’s femininity. To be a hairless woman in this society is to be neutred. “I feel like an ugly old man,” says a fellow baldie.

So I seek solace at the gym. The guys in the weight room don’t seem to care. I’m just one of the boys under my baseball cap.  Alas, I can run, but I cannot hide. Each workout begins and ends in the women’s changeroom, where every shape and size of femininity struts around with a towel on her head.

Trying to look like one of the girls, I do the same, but without lashes, my big, bare blue, eyes stare back at me with even greater intensity. I’m enough to  scare small children arriving for their swimming lessons. One thing is for sure, I don’t want their mother to have to answer the question, “Why is that lady bald?”

As I adjusted my turban one night, I stood next to a woman getting dolled up the night. I couldn’t help feeling envious as she langorously applied her mascara, like some cosmetic foreplay. It was hard not to watch, like a little girl watching mommy put on make-up.

I averted my gaze as it wandered back to my own face. I don’t see a vision of health. I see my disease staring back at me. A light bulb with eyes. “Who is this person?” I wonder. A thing? An it? An I?

“Own it,” a male friend advised. I’m trying. Really. Every day, I force myself to get out the door, an ordeal in itself. The daily what-to-wear is compounded by what to wear on my head. Every morning I put on the same heap of clothes that I left on the floor the night before. Now instead of being designed for style, my wardrobe is designed to skulk away from stolen stares.

“It’s a scar,” says my brother. Exactly. I’d planned to go through my cancer treatments like a trooper, get my hair back and go back to normal. Now when I look in the mirror, I don’t see health. I see the face of disease. I just want to get “on with it”, but it’s strangely difficult without hair.

Even a friend’s shitzu understands the humiliation of hairlessness: she hides under the couch after her seasonal shave. That little dog instinctively understands what the hair-brained do not: that to be shorn of her hair is to be shorn of femininity, her very sense of self.

I feel like the line from the Talking Heads song, “Self. How did I get here?” Our lives sometimes take us places we never imagined. “Think of what you are learning from this,” says a friend desperately searching for consoling words. I have lots of questions, but no answers. And they don’t even have the soul-plumbing satisfaction of life’s big questions.

In lieu of any answers, my fickle follicles make me realize that I have to accept the fact that this story may not have the neat ending of a pop psychology morality tale: I suffered, I overcame and I am a better person for it.

All these months later, I am wondering where to draw the time line between temporary and permanent hair loss. I swing between hope and the bald facts. As oncologist Jerome Groopman says, hope is “clear-eyed” and has no room for delusion. I’m clear-eyed all right. I just wish those eyes had some lashes.

Photo: www.kittywigs.com

Nancy: Déjà Vu

My sister, and my best friend, died in 2002 at the age of 54 after a difficult seven-year fight with breast cancer. I was my sister’s support system during her journey and I thought I knew everything about breast cancer. Later, I learned I didn’t. Little did I know that chemo would leave me permanently bald.

My sister’s battle included high-dose chemotherapy and a stem cell transplant. Unlike me, she did not receive the chemotherapy drug, Taxotere, and her hair grew back after treatment. When she found a lump on her breast, her gynecologist, who had delivered both of her girls, said it was probably an infection and to watch it for a month or two to see if it disappeared. Her last mammogram was six months prior. Then she felt a lump under her arm. The rest is history—she was Stage III ER/PR+, Her2/Neu negative at diagnosis. Her recurrence happened at five years from diagnosis. She died an ugly, painful death. Her young daughters and I may have lost her, but she lost everything.

So when I was diagnosed at the age of 58 in 2004, I told my oncologist that I had already died of breast cancer two years before. I obviously was afraid of breast cancer and checked myself daily, but I never felt a lump. My sister and I are both educated women who took care of our health (ate right, exercised, stayed thin and had our mammograms/checkups every year). But all these things didn’t make a difference for us.

I didn’t feel well for a year before I was diagnosed. I had gone to the doctor repeatedly to find out what was wrong. My left breast really hurt, but I was told, “breast cancer doesn’t hurt.” I had my annual mammogram and breast exam just ten months prior to diagnosis. I developed a cold sore, for the first time in my life, about eight months prior to diagnosis. It just wouldn’t go away and spread into the roof of my mouth. I was treated with several rounds of anti-viral drugs.

I also had a basil cell lesion along the bra line of the breast with cancer that had to be excised. I even had a breast exam two months prior to diagnosis, but my internist didn’t find anything or send me on for further examinations. So you might guess that I am angry and also a little suspicious of everything touted regarding early detection and proactive awareness.  It didn’t help my sister and it didn’t make a difference for me.  One thing that certainly needs to change in medical school is for physicians to be taught that breast cancer is not one disease and that the symptoms vary.

The final trigger was when I woke up one morning and noticed that my left nipple was inverted. That’s when I was convinced I had breast cancer. Yet even with that symptom, they were still going to wait two weeks to do a needle biopsy since the ultrasound could only detect something very small. I called my prior gynecologist and she got the ball rolling. I had a biopsy, followed by a lumpectomy and a mastectomy. I was diagnosed Stage 3C, with 11 of 11 nodes positive, ER-/PR-. HER-2/Neu positive. I was told very bluntly that I had a lot of disease with a poor prognosis. I received dose-dense chemotherapy, including four rounds of Taxotere/Herceptin and 35 rounds of radiation.

When the breast cancer spread to my neck nodes, Tykerb was added to my protocol. Again, it took over six months to second diagnosis. My only symptom was the loss of my voice due to a paralyzed vocal cord. Eventually something was detected on PET. When my hair didn’t return after treatment, a number of oncologists and dermatologists told me that they hadn’t seen this happen before. I couldn’t find anything about it on the Internet. My physicians certainly didn’t seem to care or were very empathic. None of them said that Taxotere was the likely culprit.

I know better now. My current breast cancer oncologist immediately said to me on my first visit in 2008, “Permanent hair loss sometimes happens to women who take Taxotere”.  Needless to say, I felt alone, angry and very depressed when this first happened to me. Bald men are considered sexy these days, but bald women are regarded as freaks.

I love sports and the outdoors, so not having hair really presented a huge problem. I searched and searched for an acceptable solution… and it took me over three years to find one. Unfortunately, the solution is very expensive.

I believe the drug manufacturer should compensate me and others affected by this serious side effect. I was never told this could possibly happen. Compensation is not going to give us back our own hair, but at least we can have the next best thing:  to make Sanofi-Aventis, the manufacturer of Taxotere, do the honorable thing for all of us. At this stage of my journey, I want to be a “poster child” for a breast cancer vaccine research project. I think we should be spending most of our breast cancer research money in this country on finding a cure, rather than on finding new treatments to merely prolong life. A cure is what I want for the next generation of women so they never have to experience this nightmare.

Our goal is to raise awareness of the drug company’s non-disclosure among oncologists and their patients. We want to make sure that no more women are left uninformed about this side effect.