Jill McLaughlin on March 8, 2016 at 1:43 pm said:

Oh my gosh, you just wrote my story and there is no way I could have written it better myself. I was diagnosed with IDC like you in July 2013 and began treatment in August 2013. Here I am almost three years later and I’m still bald. Wigs are a joke, I agree. I’m sick of hearing everyone say “well at least your alive”. While this may be true and I thank God, let me shave your head only to find out you can’t grow it back and see how you feel. Worse yet, is not being told. It’s not right that we weren’t given the information to make an informed decision. My hair was the one thing I loved about myself. Losing my breast was nothing compared to my hair that will never come back. Amen to your story sister.

 

 

Cathy Johnson on March 8, 2016 at 4:17 pm said:

This is a beautiful, courageous story and well-told. Thank you making me more aware of the reality of this situation–and you’re right, it is unacceptable that in this day of modern science, nothing can be done to prevent this side effect.

 

 

Carol on March 8, 2016 at 10:09 pm said:

Well said! One look at us and our history is revealed – I want to be in charge of my story rather than have it advertised by my appearance. It took 3 years after treatment before I recognized myself in a mirror. To this day I don’t allow photos.

 

 

Jill McLaughlin on March 8, 2016 at 11:14 pm said:

I was just reading on Alopecia world that there is a lady who posted this month that she had started taking Humira her Crohns disease and now she has a full head of hair within six months of taking it. Has anyone else heard about this?

 

 

Yvonne on March 9, 2016 at 4:02 am said:

I cried when I read your story Michelle. This is my story as well and 4 years after ending treatment I find it harder and harder to cope with the hairloss.
Your photo at the end could be mine. It is devastating what has happened to us.

I really would like to fight and go on but some days, it is just not possible. I miss my hair so much….I really hope that we can spread awareness that this se is unacceptable and that women can make a well-informed choice, something that was denied to us.

 

 

Karen Robinson on March 9, 2016 at 11:44 am said:

Well said Michelle. We all feel your pain. It’s been almost 4 years since I lost my hair to Taxotere. I have even less than you. No one understands how it feels not to have our hair back except us. You described very well the problems we have with wearing wigs. I have ended up shaving all my gross hair off and go bald in the summer with a hat or if I can get a henna crown done I don’t cover up. It has taken me a long time to have the courage to do this. Hugs to you.

 

 

Kathy on March 10, 2016 at 1:50 pm said:

Unfortunately, my story too, Michelle. It is so easy to comment to someone, “You look nice in your wig,” but who really knows anything about wearing a wig until you actually have to wear one? When we made the choice to accept our recommended treatment, having chemo just like everyone else, we were sitting in a doctor’s office, still wearing our own real hair. You described very well the painful realities of trying to wear a wig every day for the rest of your life. Everyone knows that people don’t like having to lose their hair during chemotherapy, and that they would rather not. It just hurts EXTRA HARD when that hair loss is permanent.

 

 

Suzanne on March 10, 2016 at 6:17 pm said:

Michelle, you have written your story so clearly. Thank you! I don’t know if there are any circumstances where it is ok to have to wear a wig, but our situation could have either been avoided (by a different chemotherapy) or at least it would not have come as a surprise (if we had been warned). Wearing wigs is fun if you do it because you want to change or try it out or if it is temporary – it is far from fun if you have to wear a wig because of the situation we’re in. I’m sorry, it’s just not. After 5 years of having this result (my photo looks just like yours) hope that it was all a mistake and my hair will return has vanished. It is very very difficult.

 

 

Helen on March 15, 2016 at 11:13 pm said:

My story is exactly like yours Michelle. After 6 cycles of doxorubicin, cyclophosphamide, and taxotere for stage 2a triple negative breast cancer, I thought great now I will get my hair back. Well, only about 1/4 of it actually grew back. People really do not get this. Yes, of course, I am glad to be alive, but I was so utterly unprepared for this. Like so many people, I was not told about this potential side effect. One of the hard things for me is meeting new people who don’t know that I had breast cancer. It’s not something I like to blurt out, but I feel like I need to “explain” my hair because I know they are wondering.

 

 

Andrea on March 29, 2016 at 3:24 pm said:

I share your frustration with hair loss after taxotere. My last treatment was almost 6 years ago and while I am fortunate enough have just enough hair to go without a wig I cannot wear my hair down and have to pull my hair back to play hide the bald spots everyday. If I am in bright lighting my scalp lights up and becomes instantly visible through the thin layer of hair covering it. I hate going into a store where they have the security monitor. Any confidence I have is ruined when I look up and see my scalp shining where I should see dark hair. Yes I am grateful to be alive but I almost refused to take chemo because of the temporary hair loss as I loved my long thick hair that I always felt was my best feature. My eyelashes came back thin and they are too short for a curler. Rogaine has helped slightly but still consider getting a hairpiece. I consider joining one of the lawsuits not for any money for myself but because I believe there are more than 6.3% of women with permanent hair loss and many of us do not report it. I hope they are forced to use their profits to find a way to reverse this. I was so angry when I talked to my onc. about my hair loss a few years ago because he was aware it was a side effect – why weren’t we told up front especially when Taxol was available? I think all of us could handle this better if we knew this could happen up front but to be told your hair will grow back and you will look like you did before makes accepting it so much harder. I am grateful we are all alive but I want to not look like a sick person anymore.

 

Tami on April 3, 2016 at 8:56 am said:

Took Taxotere in 1999. Hair never came back. An hour hasn’t gone by in 17 years where I don’t think about having alopecia. Back in 1999, doctor said “Never have I seen this happen.” Year after year I go to see her for a check up. Never does she mention that Taxotere caused this. I thought I was the only one – a fluke of nature. I researched the reason for the first two years and just gave up. I accepted my fate and tried to move on. What a day when I recently found out that there were others like me. Although it makes me sad that others are enduring the same hairless days, I know that I am not a fluke- an unfortunate one. Heck yes I am happy to be alive. However, I also feel that the drug companies need to be held responsible. I was only given one option when diagnosed. No options. Told my hair loss was temporary.

 

 

Donna king on October 18, 2016 at 12:16 am said:

I lost it when the chemo nurse told me “I know how you feel”. No you don’t. I am thankful to be alive. I feel guilty complaining about my lack of hair when two of my friends have died from cancer. Not only did I lose my hair, I lost me. I still have a hard time recognizing me in the mirror. The meds everyone wants to give me for hair regrowth is temporary. If you don’t take them forever your hair falls out again. No thanks. I can’t do this a second time. I would rather be bald.

 

 

Donna on October 18, 2016 at 12:18 am said:

I lost it when the chemo nurse told me “I know how you feel”. No you don’t. I am thankful to be alive. I feel guilty complaining about my lack of hair when two of my friends have died from cancer. Not only did I lose my hair, I lost me. I still have a hard time recognizing me in the mirror. The meds everyone wants to give me for hair regrowth is temporary. If you don’t take them forever your hair falls out again. No thanks. I can’t do this a second time. I would rather be bald.

 

 

Satyanaryana Raju on December 26, 2016 at 11:38 pm said:

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.

 

 

Rebecca Weber on August 30, 2019 at 1:12 am said:

I dont know yet if my hair will grow back. I am only one month out from last chemo treatment of taxotere. I actually researched drugs prior to being given. I was told by my onc and onc pharmacist that taxotere permanent hair loss is really rare and that my hair would grow back. With all the stories I have read it doesn’t seem very rare to me but more of just the norm.

 

 

Nancy on September 2, 2019 at 1:47 pm said:

Hi Rebecca,

My oncologist told me the same thing and even discouraged me from wearing the ice caps. I wish I had gone with my gut and not listened. Most people I know who had Taxotere don’t have the hair they had before. The degrees it comes back are different for many. I hope you are one of the ones who gets it back.

 

 

Beverly Williams on September 30, 2019 at 1:03 pm said:

we lost the first trial
if you can go to the next trial in March 2020 please go
we need to make a stance and show up with our wigs off

 

 

Nancy Palmer on October 16, 2019 at 9:39 am said:

I agree that any victim of this drug needs to go the bellwether trials. Make a statement that bullying vulnerable women is not acceptable.

 

 

Janet Lambert on January 22, 2020 at 8:39 am said:

I am so glad to read your article and the real truth about it feels to permanently lose your hair. I have some hair but many bald patches… I have learned how to swirl it around and spray my scalp to make it appear as though I have hair but it is not my normal beautiful hair I had before. In addition it’s not my color or texture and it’s weird wispy hair that is not really able to be managed. No one wants to talk about how it feels to permanently lose your hair! I have been labeled negative just for having no hair. Most my friends and family have gone away from me making my diagnosis of cancer and permanent hair loss even more tragic. I go to work and come home only to my puppy dog. I am single and no man wants me. They have often commented why would they want me when they could have a normal woman with breasts and hair. It is such a bitter pill!

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