A Melancholy Anniversary

Ten years ago today, I saw my hair for the last time. I had received my second treatment of FEC (Fluorouracil, Epirubicin Cyclophosphamide) the week before and had been ‘finger combing’ my hair every morning since, knowing it was only a matter of time until clumps of hair would abandon my scalp and my inevitable baldness would ensue.

On February 13, 2007, I had a lunch date with my good friend John. In the shower that morning, my finger comb filled up over and over with my loosening hair. Although I knew I was going to lose my hair with treatment, I surprised myself at how upset I was watching the hundreds of strands collect at the drain.

I got on the phone to the hairdresser only to find out my regular stylist was off that day. I lost it and had to hang up. Once I composed myself, I called back to make a late morning appointment with someone else and John and I stopped off at the salon for a really short haircut before heading off for lunch.

I had a really good head of healthy, full ‘Irish’ hair—so much so that sometimes I would grumble at how long it took to dry—I could never go to bed with damp hair because it would be a wavy mess in the morning and I would have to start the drying process all over again. I remember the last time I wished my hair would dry faster and have often regretted even thinking it.

I was so lucky as every day I could get out of bed, run my fingers down my part and my hair would settle into its style. With a bit of blush and lipstick, I was ready to start my day. My eyebrows had thinned a bit as I got older, but I had lovely, lush lashes which had never required mascara—I had always been a ‘get up and go’ kind of girl. I felt lucky that I never had to worry about running mascara or spend that extra time at night removing eye makeup.

How things have changed! I have about one quarter of the hair I had in the shower that fateful morning. My thin, post Taxotere hair sticks up all over my head every morning and needs ‘arranging’ daily—sometimes more often if I am caught in the wind and my extra strength hair ‘goos’ don’t hold. I’ve never been a hat person—with all the hair I used to have I just got too hot and now wearing hats just reminds me of when I was bald and sick and had to wear them. My eyebrows are non-existent and have to be drawn on every day. My biggest fear is that one or both will wipe off or smudge and I won’t notice. I’ve never been a mirror checker and like wearing a head covering, I still haven’t adopted the habit.

Our appearance is a neon sign advertising that something is, or has been, very wrong with us.

I find it interesting that TV ads regularly show men and women lamenting their thinning hair and bald spots with various companies offering treatments and potions to restore their manes. Words like ‘embarrassed’, ‘devastated’, ‘humiliated’ and ‘depressed’ are used to describe their feelings. When cancer patients use these terms with regards to how they feel about their Taxotere induced hair loss, they have been ridiculed and maligned and told they should be happy to be alive. What’s the difference? If someone who is genetically predisposed to thin hair can elicit public attention and commiseration why can’t those who unknowingly took a drug to cure a life-threatening disease and suffered the consequence?

Taxotere users generally don’t have only their hair loss to contend with. Our group has experienced body changes with lumpectomies or mastectomies and the associated, constant nerve and bone pain; side effects of medication including loss of feeling (neuropathy) in our hands and toes, osteoporosis and joint problems and the constant cloud of recurrence or worse yet, spreading of the disease. We all wonder if the serious treatments we endured have been enough.

Our appearance is a neon sign advertising to the world that something is, or has been, very wrong with us. After treatment, life usually returns to normal and cancer becomes a mere blip on the timeline of life, but we are reminded every day of the journey we have travelled and the unknown road ahead. Most of us can’t go out in the world without hairpieces, wigs and time- consuming make up tricks—friends tell us not to worry about it, but if the shoe was on the other foot….

I am thankful that I was never one to depend on my looks, but I am more self-conscious now than I ever have been—even combined with the ‘who knows me?’ and ‘who’s looking at me?’ attitude of an older woman. Very few friends have ‘drop-in’ privileges—I don’t answer my door if I don’t have my hair done and my brows on. I have refused invitations to see former colleagues and old friends because I expect them to be curious about the huge difference in my appearance and I don’t feel like explaining everything or re-introducing myself—it took me four years to recognize myself in a mirror! I don’t seek out former acquaintances and avoid social media. I have changed jobs and met many new people, but take the first opportunity when I get to know them better to self-consciously explain this is a new hair situation. To the annoyance of my friends, picture taking is absolutely out of the question—I don’t know if I’ll ever feel comfortable with the way I look.

I often ask myself how much longer I am going to hope for the old me. I have waited nine years for my hair to return and am starting to accept that it’s just not going to happen. I have tried all kinds of treatments but, like the other members of our group, there has been little improvement— certainly not enough to continue the twice-daily regimen and associated scrutiny of my scalp.

We all recognize that many people in the world deal with much more serious circumstances, but we were put in this situation unknowingly and are left to deal with an unnecessary and very difficult consequence. Members of our group diligently scour the Internet for new discoveries to potentially reverse our plight. I keep my fingers crossed that by my 20th anniversary this website and our group will no longer need to exist.

I can only hope that, in the meantime, the ‘head shamers’ and trolls will step back and examine why they are unable to empathize or keep their comments to themselves.

 

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!

Taxotere Doesn’t Discriminate

I took photos of my hair returning because I was so excited.  I remember the earlier photos and how I thought I looked like a dandelion – and then it all stopped with this. Nothing has changed in five years . . .

I took photos of my hair when it started to return because I was so excited. I remember the earlier photos and how I thought I looked like a dandelion, then it all stopped with this. Nothing has changed in five years . . .

We’ve banded together as bald breast cancer female survivors. We found each other via this site and our numbers continue to grow.

I have always wondered about the people who don’t find us, are befuddled by their lack of hair, don’t report, or succumb to their disease and this side effect remains unknown. I have particularly wondered about people with OTHER cancers treated with Taxotere. Last week, I had my first experience with this.

I met a man, a prostate cancer survivor, who was treated with Taxotere. He commended to me (totally unsolicited) that prior to his treatment with Taxotere he had a full head of beautiful silver hair.  Since his hair “grew back” after Taxotere, it is thin, brittle and dull.  Because he is a man, I think it is easy to overlook this as a potential side effect from Taxotere vs. a man aging. He is convinced it’s from the Taxotere and so am I, knowing what I now know.

This man likely fits into that group of people treated with Taxotere who either don’t report this to their oncologist, or who are brushed off by their oncologists. We all know who we were and how our hair was before it all fell out and how it only sort of grew back—here and there or not at all. How can it possibly be anything else?

We’re all around us, male and female, and as Taxotere is being used to treat a lot of different cancers, our numbers will continue to grow. Every time I see a woman (yes, it’s always a women because as a society we tend to accept bald men) whose hair is thinner than typical thinning that often comes with aging, I always wonder, “Did she have cancer and was she treated with Taxotere?”

I would never have given a second thought about that man’s hair loss I’ve described above — and I should! Taxotere doesn’t discriminate, is not used solely in treating breast cancer, and as its use continues to become more prevalent, we should be warned of this potential PERMANENT side effect — all of us!

by Suzanne   

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
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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.

Baldly Forward

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I’d planned to mark my 50th birthday with six-pack abs and Popeye biceps. At 49, I was right on target. At 49 ½, I was diagnosed with breast cancer. All that running, yoga and those “grass drinks”, as my boyfriend calls them, didn’t stave off old age or disease. But chemotherapy did stave off my hair.

A visit to the dermatologist on the eve of my 50th birthday made it official: I have Alopecia Universalis, a little-known side effect of chemotherapy. I didn’t need a dermatologist to tell me what I already know: I’m totally bald. No nose hair. No ear hair. No nothing.

But the official diagnosis has given me an unexpected birthday gift: clarity. Now, I no longer have to listen to wishful reassurances from friends and family that my hair will come back. As a middle-aged lady with toys, I don’t need any more encouragement to              be delusional.

“True hope has no room for delusion,” wrote oncologist Jeremy Groopman. “Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to         surmount them.”

The bald truth simply means I can start to move forward. For once, my doubt and sarcasm weren’t just glib defense mechanisms. They were spot on, the perfect ballast for all the pleas to think positive. Still, I want to remain hopeful that my fickle follicles could suddenly spring to life—which can mysteriously happen with alopecia—but for the ever-present now, I need to learn how to live as a bald lady.

One thing has become painfully clear since my surgeon first rang the bald alarm three months after my chemo ended: I’m on my own on this. There are no role models for ladies who’ve been made bald by chemotherapy. If there is one, odds are she’s hiding at home under a baseball cap, the universal coping mechanism of the newly bald.

My doctors certainly aren’t forthcoming with any advice. My bald head has become the elephant in the examining room, provoking the clinical emoticon of reactions: Stares. Silence. Fear. It’s as if they can hear me thinking, “If a quick Google could connect the dots between chemo and baldness, how come you couldn’t?”

One dermatologist wrote me a prescription for Monxodil, which I Googled for side effects. In addition to putting hair on your head, Monoxodil can also sprout it on your face. So I tore up the prescription. The last thing I need is to be a bald, bearded lady.

After that lovely finding, I decided to just say “no” to drugs. “Every solution has side effects,” advised another dermatologist. Since I’ve already drawn the short straw on chemo side effects (see: bald, fat, osteoporotic), I decide to forgo the snake oil cures. They all work for a while, but hair falls out as soon as you stop using them. I’d rather deal with the sure thing of being bald, than with the emotional rollercoaster of potions and promises.

The clarity of an official diagnosis is a giant step towards acceptance—although it’s not a straight line through Elisabeth Kübler-Ross’s five stages of grief. It’s more like one of my college room-mate’s perambulating stories, prompting her brother to quip “Lisa goes from A to B via Z.”

So I go from humour to hysteria to hiding, then back to anger via wailing and gnashing of teeth. The spectre of being permanently bald is a psychic assault, making me swing between outrage at those who “did this to me” and a rocky resignation that bald is the  new 50.

A good day—when I actually screw up the courage to go out—is punctuated by another day of hiding in the house. Mostly, I prefer to throw myself into work and keep my mind off my melon. Easy to do, since my home is my office and I don’t have to deal with wardrobe anxiety or curious co-workers.

One of the few places I dare go is the gym, a favourite place to clear my head. I plop a kerchief on my head, plug in my iPod and pump it up. In the weight room, I am just another parallel universe working out with plugs in my ears.

Once, as I stopped for water, a tiny, well-coiffed woman shattered my Shuffle when she whispered, “I’m wearing a wig”—code phrase for cancer.

“I think you’re very brave,” she said. This from a woman who had just survived the odds against ovarian cancer.

“It’s nothing to do with courage,” I replied. “I’m just too lazy to fix myself up.”

“I couldn’t go out without my wig and make-up,” she added. “Though the wig makes my head a little sweaty on the treadmill.”

“I just don’t know what to do with that stuff,” I admitted. “I’ll take a bald head over a  sweaty wig.”

“You’ll learn,” she said encouragingly, and like a big sister, gave me tips for drawing on eyebrows and creating the illusion of lashes. The mere suggestion that I don’t have to accept looking like an ugly old turtle was heartening… yet daunting. It’s a fine line between looking great and looking like a drag queen.

I’ve always been a jock/fashionista who loves sports and clothes. Two years later, I am still miffed at being passed over—by a guy—for my triathlon team’s annual “Best Dressed Cyclist” award.

When I worked at a fashion magazine, I possessed superhuman abilities to find the perfect heel under stress. But me and my oily T-zone would exit stage left when the hair and make-up people rolled in with their obsessive powdering and primping.

Oddly Empowering

So here I am, all these years later—a make-up klutz desperately seeking tips on how to draw on eyebrows and glue on false eyelashes. I went for a “Baldie Make-over” at a local salon, but it was hard to see how I looked through the glops of glue on my fake eyelashes. I couldn’t wait to get home to whip off my wig and peel off my lashes. I was back under that baseball cap in no time.

Now, my sports aren’t just a source of solace, they’re a source of headgear: cycling helmets, ski toques, bathing caps. Throw in some shades and goggles and they’re the great equalizer.

The locker room after swim practice is a noisy place—kind of like a big boisterous family, where I feel comfortable enough to walk around “topless”.

As I stood in front off the mirror, trying to erase the crop circles my goggles dig into my forehead, I noticed one of my team-mates, stealing concerned glances.

“How are you?” she asked. She’s good with the clock—in and out of the pool—so I asked, “How much time do you have?”

Normally, I don’t stop to chat—my bald head makes healthy people nervous—but that night I told her the whole big hairy deal, fighting the urge to cover my head from the startled gaze of passers-by.

Standing there, boldly bald, was oddly empowering—and a bit of a turning point in my “recovery.” It made me realize that I am not a TOTAL freak: our superficial society constantly encourages us all to dress up our problems, rather than to deal with them, uh, head on.

So I wonder… Why can’t I just strut around with my bald head on parade? Am I hiding from me? Or trying to save others from embarrassment? Should I play Princess Alopecia and learn to wield an eyebrow pencil? Or buy a jumpsuit and let the force be with me? Cancer comes with lots of questions, but very few answers.

One thing is for sure: I’m so obsessed with my reluctant follicles that I don’t have time to worry about a recurrence of cancer, a bit of strange birthday gift in itself.

Alas, all this pontificating is making my head sweat. So I venture out for a birthday fête with a friend, the same one who shaved my head, pre-chemo, to prevent that plucked chicken look. I’ll never forget that night as he swept my hair off his kitchen floor, the last time I would ever see it.

He’s the kind of guy who’d rather see his wine glass as half full, than half empty, so I can always count on him for a boozy reality check.

“Losing your hair at 50 is just practice for losing other body parts,” he quipped. “Teeth at 70. Your mind at 80.”

He’s right. Back at the gym—I have to work off that dinner—I meet a slightly older woman in the weight room. She’s had some work done, but she looks good: She’s got… HAIR!! And gravity-defying boobs.

But loss has found a way: she self-consciously shows me her tiny hands, the top of her left thumb surgically removed to halt the spread of melanoma, a malignant skin cancer.

I wonder what she’s doing for 60.