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)

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

Lise: Finding the Colour Again

Finding the Colour Again, Watercolour by Lise McDermid

Finding the Colour Again, Watercolour by Lise McDermid.
Inspired by the Marina McDonald photo “Take What you Want and Pay for it.”

 

The painting details my receding hairline, the ghastly thin hair, my lack of eyebrows and eyelashes, the impact of the permanent disfigurement of losing my thick, long blond hair from FEC D (FEC T).  The cruel irony of being alive but having to live with such a horrifying disfigurement, the desperation I feel when I look at myself closely in a mirror. The colour and vibrance in my life has washed away.

Coming to terms with the long-term loss of my hair has been a very slow process.
It has been much harder to cope psychologically than with the cancer itself, my double mastectomy and radiation, the loss of my fertility from premature menopause, the continued side effects from anti-cancer drugs and the long wait for reconstruction to be completed.

The cow is a reminder of the constant online support I’ve had from other breast cancer survivors.

by Lise (Australia)

Follow her award-winning blog: www.shittytittiebangbang.com

Emma: If only…

Five years after FEC-T

Five years after FEC-T

Diagnosed with breast cancer in 2010, I put myself completely in the hands of the excellent UK NHS care. I was treated with kindness and support and was completely reassured about all aspects of my treatment. I only have praise and gratitude for the specialist nurses, the surgeons, the oncologists and the many others involved in my treatment and care.

Five years on I am well and reconstructed and getting on with life.

If only I had hair I could put the cancer behind me and get back to being me.

In the first year post FEC-T chemo I waited patiently, I took photos every week to convince myself it was growing. In the second year I invested in supplements, lotions and some potions – nothing more grew. In the third year I tried to get the medical profession to recognise that chemo had caused this only to be told it was genetic (as my grandfather had gone bald at 75!). Four years on I found I still felt the need to tell people I was wearing a wig – in the vain hope that I soon wouldn’t be.

It’s five years since I had hair now and I’m resigned to a life of wigs, insecurity and guilt. Guilt, as I know it shouldn’t matter. I’m alive. I’m fit, I’m well. But it so does matter.

Family and friends love me in the wig and without the wig. But I still cry when I have to explain it to a stranger. I put my wig on to open the door to the postman, I wrench it angrily from my head once I’m in the car heading home from work.

Without the wig I’m still a cancer victim, with the wig I’m not me.

It would have been so much better to have known that this was a possibility. I’d probably have still accepted the recommended treatment but at least I’d have been spared the years of not knowing and searching for an explanation and cure.

by Emma (England)

 

 

 

 

 

 

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.

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.

Carol: The Chronicle of my Follicles

Jan 07—Diagnosed with 70% chance of mets; prescribed the harshest chemo available: 3 FEC/3 T (3 X Fluorouracil, Epirubicin and Cyclophosphamide/3 X Taxotere). Was told ALL my hair would disappear. Bought wig as pre-emptive measure

Feb 07—Hair loss from E and C of FEC chemo. This was the last time I had my real hair, eyelashes and eyebrows (and everything else, too!!)

April/May 07—Had 3 doses of Taxotere and anxiously awaited the return of my mane!

June/July 07—25 doses of radiation with a bolus, a thick pad on top of the radiation site to make me “cook” even better. Hair wasn’t sprouting at all; was told that could be due to the effects of radiation. Started taking Arimidex, which also affects hair growth—thinning and male pattern baldness is a common side effect. It has been blamed for my hair condition ever since.

August 07—Waited……

Sept 07—Had a little bit of hair and was tired of my wig—made me feel like I was still sick, so began going “topless”.

Oct 09—Still waiting. My hair has grown in a bit, but is only about one-quarter of the original. I have about half of my eyelashes and one-quarter of my eyebrows. No one was able to tell me why I didn’t have any hair and why it wasn’t growing, so I did more research. Found out about Taxotere side effects and discovered the group “Taxotears”.

The effect enduring baldness has had on me:

1. I don’t recognize myself in photos or when I see my reflection
2. I still look like I’m in treatment
3. I feel “exposed”, when I prefer to look “anonymous”
4. I would prefer to choose who knows my history rather than have it so obvious
5. I have had to resort to another wig, but it makes me feel fake. I feel better, but it’s not the real me either
6. I tried to make the best decisions to heal my body, but something else suffered in the process
7. I manage very well usually, but when I sit down and think about it (like now) it makes me cry.