Sherri Jo on February 17, 2010 at 5:22 pm said:

Wow. This is beautiful and captures all the feelings I’ve had – the burden of being chipper, being placated by the “well-coiffed,” the compassion fatigue from friends. I especially identify with the “cosmic joke” of just coming to terms with my beauty. It took me 40 years to become comfortable in my skin and now I’m starting all over again. I feel all of that and yet I’m not even facing half the battle that you are.

I’m so sorry this has happened to you and to others as well. You have expressed the issues so eloquently in this piece. I believe naming it and saying it out loud are the first steps to finding some kind of peace with it. I hope that somehow you find that peace. I hope we all do.

By the way – who wrote this? I don’t know who you are.

Sherri Jo

 

 

Elizabeth on March 11, 2010 at 10:11 pm said:

I was the first patient that my oncologist had whose hair did not grow back after chemotherapy. That was nine years ago. I had a very aggressive cancer with 19 positive lymph nodes, but no sign of spread to other parts of the body. Since we were still technically dealing with localized disease, we planned an aggressive treatment that included taxotere. I think it worked because I have no sign of cancer–my ER negative and H2Neu positive cancer has not returned, and my health is excellent. I do miss my hair but it’s loss is more than compensated by my three grandchildren born since my diagnosis whose births I would certainly have missed without the chemotherapy. My oncologist now has over 20 patients whose hair has not returned after taxotere, and she now warns patients about the possibility. All of us had aggressive tumors and all are doing well. For those of you who have experienced permanent hair loss, I hope that you have the same positive results that I have had. It’s really not such a bad trade-off: my hair for my life.

 

 

Shirley on March 13, 2010 at 4:43 am said:

Elizabeth, i found your letter very interesting. As you know that all these other 20 ladies have had aggressive tumors, i assume you know them?, maybe you could tell them about this site. It might help them a great deal.
I hadn't realized that they tested for HER2 that long ago! When did they start doing this in the USA? i think in the UK it was about 2005 but i could be wrong. America seem so far in front were BC is concerned.
However i don't agree with your last sentence. I don't look at it as a trade off – my hair or my life at all. There are many other good drugs to choose from i.e Taxol that doesn't carry the risk of PSA (or a smaller risk).
You have done fantastic, especially after having 19 positive nodes – i hope you continue to stay in great health.

 

 

Abby on March 13, 2010 at 6:31 pm said:

Elizabeth,

This is not a simple my-hair-or-my life decision. It’s about a patient’s right to make fully informed decisions. And it’s about medical ethics. Your oncologist is required to report any adverse side effects to the FDA or the appropriate regulatory body in your country. Is she?

 

 

Cathy on July 23, 2012 at 12:23 pm said:

Hi Elizabeth,
It’s been over 2 years since you wrote your piece titled Shorn of My Femininity and it is eloquently expressed. I just stepped into this realm myself. Like you were in the beginning, I’m still holding out hope that I’m a late bloomer. Everyone tells me it’ll grow; just be patient. Of course, these are women who have never walked through an oncology department, never sat through 4 hours of infusions and have never been bald at least not since they were 6 months old. How can they know the intense conspicuousness we feel, the desperate longing and the faith-shattering hurt that comes from feeling lied to. It is very good to hear in your voice—as the years have passed—that you have come to a measure of acceptance. That gives me hope, that although I might not be able to change the way my hair looks, I will be able to re-style my perspective. And right now that’s a good thing for me to keep in mind.
Thanks for your words,
Cathy

 

 

Kathryn DeLongchamp on February 4, 2013 at 2:26 am said:

Hello All,

I was diagnosed 6 years ago with bilateral bc, ER+, 14 positive of 20 lymph nodes removed, double mastectomy, ACT chemo, radiation, and am just finishing 5 years of aromasin therapy.

Pre-cancer I had dark brown, medium thickness curly hair and now I have salt n pepper, straight, very fine & sparse peach fuzz with male pattern baldness. Sigh. My oncologist has never before had a patient whose hair hasn’t regrown. I suffer from intense hot flashes and sweating, and wearing wigs raises my body temp. and triggers them, so wigs are not always a good option for me. I’m hoping that when I stop the aromasin, my hot flashes will subside and wigs will be less difficult….or even unnecessary if my hair regrowth improves without the drug.

My husband is wonderfully supportive and I’m absolutely comfortable as I am, without hair (I shave the untidy, uneven bits) at home and out in the world. And I live in Los Angeles between Beverly Hills and Hollywood where there’s a relentless culture of youth and beauty that can be overwhelmingly intimidating!

My loved ones and I unequivocally adopted the attitude that it’s a small thing to have sacrificed my hair in exchange for my life. However, I also understand this is a “right to know” issue. Ideally, my doctor would have informed me of the risk of permanent hair loss (had he himself known) and as the body of evidence and studies grows, patients must be so advised. Bottom line, it would not have changed our decision to go forward with whatever gave me the best prognosis, and that was A-C-Taxotere.

I root for every cancer patient in their struggle for wellness and hair regrowth. I hope they are informed before undergoing taxotere therapy and given the opportunity to use a cool cap during infusions. I do wish I’d known this beforehand and I certainly would have worn a cool cap.

Cheers & wishes for NED to all!

Kathryn DeLongchamp

 

 

Janet on February 5, 2013 at 10:56 am said:

Kathryn,

Thanks for sharing your story. For me, hair is about so much more than about mere vanity. It’s also about protection. I live in a cold climate and it’s freezing without hair! I am slowly but surely coping with the shock of being permanently bald, but I miss the protective aspects of my eyelashes and nose hair more than anything. I’m constantly getting crap in my eyes and my nose literally runs like a faucet in winter. And the loss of cilia in my ears has affected my hearing.

This is a quality of life issue for so-called survivors. I am not vain or frivolous enough to value my hair more than my life, but it certainly would have spared me a lot of pain and suffering to know that permanent hair loss was a risk. It was the deception that was the greater injury for me. As you know, the whole culture of breast cancer is obsessed with hair, with its constant exhortations that hair ALWAYS comes back. It was a betrayal of my trust–and downright infantilizing–to learn that permanent alopecia is too superficial a risk to tell patients about. Apparently, we’re supposed to be good girls and take our meds. No questions asked.

It’s important to know the game plan before you start treatment. It’s like running a marathon: you train, study the course and mentally prepare yourself… and then, when you cross the finish line, they say, “We didn’t tell you: we’ve added another 10 miles to the route… and you’ll have to get there on your own.” If had known that permanent alopecia might be a long-term side effect of chemo, I probably would have dismissed the possibility as being so slim. But when it did happen, I would have been less blind-sided and more resilient.

It’s a slippery slope when someone decides what’s best for you when you’re at your most vulnerable. One of my friends developed a 1-in-5,000 chance of developing Acute Myeloid Leukemia, a secondary cancer caused by her breast cancer chemotherapy. But then, I’m not sure how many are told about that either.

 

 

Shirley on February 6, 2013 at 2:51 am said:

Hello Kathryn
Yes,lets all wish for continued NED and thank you for taking the time to comment on this site.
Sanofi Aventis already knew about this problem and it was in print mid 2005 so at the end of the day if the oncs cant be bothered to read the ongoing ASE with drugs they are using on their patients what hope do we have! Either that or they decide not to inform us because of their god like status. Too late for us anyhow.
I have been off my AI for over 2 years now and have had a little change but nothing drastic enough to be able to go wigless so totally irrelevant. My flushes stopped and feel totally back to normal – until i look in the mirror then i feel deceased ! so try not to look at my reflection if i can help it.
So, lets raise our wigs to NED !

 

 

Kathy on February 6, 2013 at 3:54 pm said:

Your story of persistent alopecia after Taxotere treatment has moved me, “Kojackie,” because you so eloquently describe feelings that I have lived with ever since I also experienced persistent alopecia after Taxotere treatment. I had no idea that I was joining the ranks of a growing number of people who are stuck in the same boat.