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.

31 thoughts on “Carol: The Chronicle of my Follicles

  1. Ok, Carol. I guess I am lucky: I have not totally lost my hair, but my hair did thin drastically after chemo with Taxotere/Cytoxan (4 treatments for Stage I breast cancer). The thin spots upset me a great deal because I used to have thick, beautiful hair: it was unbelievable to me that this could happen, and of course, no one warned me about permanent hair loss. But my question to you is: how do you know it’s the Taxotere? After extensive research, I have concluded that it’s the Femara I’m taking that did this to me. They list ‘hair thinning’ as ‘rare,’ but I have talked to numerous people who had this side effect. I have come to accept my hair thinning to some extent, but still feel sad when I look at other women’s thick, beautiful hair. A reply would be appreciated. Phyllis

  2. I know mine was caused by Taxotere, Phyllis, because the experts have told me! Not everyone is on Femera.
    My hair did not return before I started any hormone drugs and I was informed then, after my oncologist had spoken to Sanofi-Aventis, the manufacturer of Taxotere. So, if your hair didn’t return properly before you started Femara, then you have your answer.
    If you look at the survey being carried out in NW France, you will see a large amount are not on hormone treatment at all and plenty not on Femara.

  3. I have not taken Femara, just the Taxotere and Cytoxan. I finished chemo Aug 2008 and I have balding and hair thinning, so I believe it is the Taxotere. I have several nails that it has affected. We walk around with a big band-aid on our heads from chemo and all anyone says is “Oh my, I’ve never have seen this,” like they are programed to say it.

  4. i too had very thick, beautiful hair before chemo. i haven’t lost all my hair but it is extremely thin on the top and sides. i have never taken femara.

  5. I started taking Femara after finishing chemo, but had problems with joint aches, so my doc switched me for 6 months to Aromasin and 3 months to Arimidex trying to find something that didn’t make me ache. Since Femara was the lesser of the evils, I finally went back to that one. My hair didn’t grow in while on any of the other aromatase inhibitors. I know Femara is listed as having “hair thinning” but thyroid disease has the same side effect. I have had thyroid disease for 20 years and it has not affected my hair during that time at all. I am convinced it is the Taxotere. I may switch to Arimidex when it goes generic just because it will be cheaper and my doc says they are all equivalent. Many of the gals do not use Femara tho and Taxotere appears to be the common denominator.

  6. I can’t say for sure it’s Taxotere in MY case. But I had the hair loss/thinning before I ever started the aromatase inhibitor.

  7. Hi Phyllis: The Arimidex I take (and any other aromatase inhibitor) can promote male pattern baldness. That’s not what I have. My hair is pretty well the same density all over my head – it’s thin, doesn’t grow very much and there’s just not enough of it! Our group is connected by one variable – Taxotere.

  8. I used to have incredibly thick hair. Now it is very thin all around and sparse on top. I had 3 rounds of FEC (Florucil, Epirubicin and Cytoxin) followed by three rounds of Taxotere. I didn’t take any other medications after Taxotere. My cancer was hormone negative so the drugs are not useful to me.

    I also had 4 surgeries in the period of 19 months. I know anesthesia and physical stress can have a bad effect on your hair. Still – it seems pretty clear the common denominator for all of us is Taxotere.

    While it is pretty clear to all of us, we still need someone with the right qualifications to collect the data and examine the evidence.

  9. Phyllis, I was on a clinical trial of Femara, but I know it was not the Femara because I was already having the issue with my hair not growing back for a full year prior to taking the Femara.

  10. I took Femara for 18 months and it had no effect at all on my hair, which was normal then. I stopped taking it in favour of Faslodex, which didn’t afffect my hair either. A year later I was treated with 6 rounds of Taxotere (due to a further metastarsis). My bald patches definitely started after the Taxotere, but I’ve lost all my hair twice more since due to treatment with Taxol and Myocet. There may well be a limit to the number of times you can lose all your hair and have it grow back again.

  11. My chemo consisted of 6 rounds of Taxotere & carboplatin given together, with Herceptin every week for 30 weeks until I had an allergic reaction & had to stop it. My hair fell out after my second round of Taxotere & two years later still has not returned….I have never taken Femara. I take Arimidex every day post therapy & will for 3 more years. I am convinced without a doubt that the Taxotere is the culprit. What little hair I have is whispy & scarce & reminds me of a dirty old man or a mad scientist. I do not go out without my wig.

  12. It is 11 months since my last treatment with taxotere (6 rounds of TCH-taxotere, carboplatin, herceptin). I had 11 more rounds of herceptin, finishing 3 months ago. I am had no other drugs.
    After all this time I have about 1 to 1 1/2 inches of thin sparse hair, no noticeable eyebrows or eyelashes (there are a few hairs but they are colourless. I wear a hat so that my balding shiny scalp can’t be seen. It has changed my life and I mourn the hair I use to have.
    I can’t see the point of having a breast reconstruction, trying to look normal again, when my appearance has been so disfigured and there is nothing to remedy this.

  13. Well, Phyllis, all we be revealed soon! I’ve been on a clinical trial for Arimidex, but have been experiencing side effects to an extreme so my Onc is going to take me off at the end of this month. She says that the side effects will disappear very quickly (within 2 weeks) so I will be interested to see if there’s any change in my hair.

    Soon after I’ll be going on Tamoxifen which can also affect hair growth. Apparently a Chinese herbal treatment called Shen Min helps with Tamoxifen hair loss, so if there’s no immediate improvement, I’ll be trying that.

    I do believe that chemo can stimulate an autoimmune response which, in the case of Taxotere, affects hair regrowth. As I already have an autoimmune condition, in retrospect it’s no surprise that I experienced this negative side effect.

    I’ll post an update in June …

  14. Hi!

    Im new here. Im a danish girl on 35 years, who also have been treated with Taxotere and I think Epirubicin for breastcancer, 2,5 cm, tripple negative, no positive lymph nodes. Choose a mastectomy.
    I got my last Taxotere dosis in january 2009 (1,5 years ago now). My hair is very thin on the top and back of my head and Im very very sorry about this, this is much worse than loosing a breast.
    The oncologist refuses that it has something to do with the treatment, just offering me a wig!!! So im on my own.
    I have now tried Monodoxil, Nioxin, Elocon and a lot of different vitamins, bucky radiation at a dermatologist.
    Does anyone have a good idea for other treatments for the hairloss?
    Maybe im a bit naive, but Latisse helped my eyelashes, but not on my head.

    Best regards Christina, Denmark

  15. Hi Christina,

    I just approved your comment, and someone will surely respond.

    Best wishes,

    Andy F
    Web Administrator

  16. I had one round of chemo(tc)and it landed me in hospital.My oncologist stopped it saying it was too strong for me.Ihad a mastectomy for early breast cancer and no evidence it had gone anywhere.It’s nearly 2 months and no sign of hair.I’m very distressed and am sorry I ever had the tc regime.My doctor and the booklet from sanofi aventis never mentioned possible permanent baldness.It may sound vain but it impacts on every aspect of your life and it’s hard to carry on.

  17. Hi
    I lost my hair following chemo last year. I had 3 lots of FEC followed by 3 lots of taxotere finishing in May 2009. I wrote to my Oncologist expressing my concerns re Taxotere and he referred me to a Dermatologist who I saw last week. He believes my hair thinning is chemically induced and says the hair follicles are ‘good to go’ and may grow again. He says it could be the Arimidex I am taking but he says he doesn’t really know and is sorry he couldn’t be more positive! Meanwhile I still wear a scarf not keen on wig and feel guilty when people ask me if I am still having treatment!
    Best wishes
    Tricia

  18. Hello Ladies,

    It was bitter sweet finding this website last night: Sweet because it is so nice to have the fellowship of those who understand what you are going through; bitter because I hate the fact that a steadily increasing number of unsuspecting women have to experience your plight.

    I was diagnosed with breast cancer at age 37 in 2007 and was given a twelve week four rounds of taxotere and cyclophosphamide. Lost all my hair except my eyebrows. After the completion of treatment my hair slowly grew back albeit much finer and thinner, but my eyebrows fell out and were replaced with wispy barely viisible fuzz.

    Having no eyebrows is nothing compared to having no hair atop your head. I sat and cried as I read some of your posts. Thank you for not sitting by and not demanding some accountability from Taxoteres’ manufacturer. My prayers are with you.

    Sincerely,
    Jennifer

  19. Try applying Castor oil for your eye browse and gently massage it for few mins . Keep it as long as you can. I have a thin line ( afetr castor oil) which looks like eye browse and my sick look has changed a lot. People feel I am getting back to being normal.( after 2 yrs , ya right ). True, having no eye browse is worse.

  20. Well,I saw my oncologist yesterday for a check up and I questioned him about my bald head.He said he has not heard of anyone remaining permanently bald after Taxatore but hair does take longer to grow back from this drug.He is off to a conference in Europe soon and will question the drug company.I have a bit of peach fuzz on top of my head(after nearly 3mths)and that’s it.What with the breast and the hair gone I look like some alien in the mirror -where have I gone?I had my first breast cancer 7 years ago-lumpectomy and radiation.It came back in the same spot-unlucky they said.Have just spent the last few years getting over 3 operations on my broken ankle-the first two were dodgy and left me in a wheelchair/crutches.Thought I was back on my feet this year but now this.Perhaps this is the end of my 7year bad luck cycle?I am grateful I’m alive and have a supportive husband who loves me no matter what.

  21. Hi Ladies – I was diagnosed with Stage 3 breast cancer in November of 2008. Had a double mastectomy in December and started chemo (ACT) in January 2009. I finished this in April, 2009. I then had 36 radiation treatments and then followed this up with a hysterectomy. I took Femara for about 8 months then switched to Aromasin. Its now over 15 months since my last chemo treatment and I have only very thin wisps of hair. I wear a wig when I go to work. I wear a hat when I am home. I have tried all the supplements, shampoos, etc and even purchased one of those Laser Combs. My oncologist is totally confused by my lack of hair and claims he has never seen anything like it. It saddens me every day that I don’t have hair. It feels like I can never “escape” from being a cancer patient because every time I look in the mirror I see this bald woman looking back at me. Loosing my hair was worse than losing every thing else. Sometimes “well meaning” people say I should count myself lucky because I am still here. I recognize that, but the comments make my blood boil. It makes me angrier when I read some of the research that is out there on this drug Taxotere. They knew in 2004 that it was causing problems and yet they never announced that it is problematic and in fact, they still do not make this known.

  22. I’m so very sorry to read what has happened to your hair, Cheri. It’s 16 months since my last Taxotere and almost 2 years since I have had normal hair. Every day I have to prepare myself for dealing with my altered appearance so I avoid people and going out as much as possible. I so miss my hair and weep knowing that it is gone forever.

    I’m getting suspicious of all these oncologists claiming ignorance about persistent alopecia after taxotere treatment.
    Is this just their way of getting themselves off the legal hook for not warning their patients of the potential risk of this devastating side effect? I question whether their concern for their patients goes beyond the financial level because it is inhumane not to clearly inform women that there is a real risk that their hair will not return.

    If Taxotere is the only option for treatment, there are things you can do to decrease the risk of permanent hair loss during the active treatment period: cold caps, minoxidil and some other drugs (my compassionate doctor gave me a list from a doctors-only website). These have worked for some women and maybe they would have worked for us but as we weren’t told!!!

  23. Keep in mind that cold caps aren’t an option for many breast cancer patients – my onc said I did not qualify as BC usually mets to the brain, bones, liver or lungs – she wanted to make sure my brain got the benefit of chemo. I used the gloves on my hands and feet to attempt saving my nails – that’s another story!

  24. I will be going on my 11th treatment of taxotere & carbotin? next week. I already lost all my hair, some of which grew back like peach fuzz, nothing to brag about and my nice, long fingernails became brown and weak and fell off. I am devastated and would like to know if anyone knows what I can use to grow my nails back and possibly my hair while still taking these drugs. Also, have no eyebrows and other hair on my body. Do not know how many more treatments I will need. After the 12th treatment, I will get a scan and see the doctor. The doctor says it is all because of the chemo, but I am sure their are ways to help grow my nails back. Any help would be appreciated.

    Candi

  25. I am so sorry to read these responses. When I was diagnosed with BC I went online and found a group of women who lost their hair with Taxotere and it never came back. After hearing that, I found an oncologist who believed in the Cold Caps. She did much research on them for me and did not believe that they caused brain mets. She showed me research comparing using them with not using them.
    I am so thankful to those women as I did 6 rounds of taxotere, carboplatin and herceptin and did not lose my hair with the Cold Caps.
    I hope you all are able to get some justice with the drug company…

  26. Hello Candi – I too lost all of my nails – they started popping off and totally freaked me out. So, I bought about 30 boxes of bandaids, a couple of tubes of bacitracin and kept them covered for about two month til they grew back [they popped off at different times, not all at once]. The nails on my big toes took the longest to grow back, because they are the longest LOL, but all grew back clear and strong. I think the bacitracin was helpful and the bandaids kept it from being so painful. When my big toes were growing out I used fabric bandaids and actually painted [bright red polish to match my other toes] nails on. No one noticed unless I pointed them out. Big toes are the worst because you can’t wear shoes that touch them. so, I bought cute peek toes shoes, painted my bandaids, taped my hair on and just kept right on going! You CAN do this too!

  27. Hi everyone,

    New on the block….was administered TAC (6 treatments) followed by 20 radiation treatments one year ago and very anxious about my patched and sparse 1/2 inch regrowth which looks and feels like baby hair. So much for being reborn 🙁

    Was never told either that hair loss could be permanent and when confronting my onco and the pharmacist who concocted my chemo, I’m feeling even more like a freak, as they say they’ve never seen anyone with this reaction….!!! So, real glad to have found you all. Will keep in touch, as I would certainly join in a class action lawsuit.

    I really feel and relate to all your comments. Was not enough to lose 1) health; 2)breast; 3) all body hair; 4) mind (chemo brain is sticking with me) the thought of having to hide at all costs my cranium appearance for the rest of my life makes me want to cry with frustration. I feel like shaving the little I have but don’t know if that will make me look even worst !

    Keep strong everyone

  28. The last 6+ years of my life have been ruled by a disease I know is incurable.
    I knew it from the day they said Stage 3C. Since my recurrence almost three years ago, I wake up each day and never know what to expect. I’m surrounded by oncologists, radiologists, phlebotomists, bone scan technicians, MRI readers, and CT/PET scan experts.

    My life has become all about waiting. I wait for what is called Scan-ziety: wondering if the cancer has progressed or if I’ve made it through another four- month round. My most recent round was extra stressful when my doctor ordered a brain scan because I have been experiencing positional vertigo. But I am happy to say all the reports say I am NED for now.

    I still wear a hair replacement system for my baldness. I guess my attitude is there are no pockets in a shroud—I can’t take anything with me so I might as well spend it quickly. I just got an e-mail yesterday from a woman suffering with Taxotere hair loss. She and I are both stage IV at this point so Taxotere didn’t save our lives but it did leave us with extra pain and suffering.

  29. March 1,2010 was last Taxotere and cytoxan treatment. I have peach fuzz on top and thin growth on side. Have to wear a wig because I want to feel normal -whatever that is. I wish the literature about taxotere was more specific about the odds of permanent hair loss. I feel most web sites also ignore this fact. My oncologist ran thyroid and testosterone levels to see if that was the problem – but I had read the blogs and am sure I am a 1 in 16 victim. I also had a bowel perforation after the fourth treatment which resulted in colostomy and reversal. It has been a hard 19 months and the lack of hair is a constant outward reminder.
    Thanks for the website.

  30. My treatment for BC 6 years ago was Taxitare followed by :Herceptin….My hair is very thin on top and I have to wear a wig…It is devastating really.. and not great for morale….. I also suffered severe foot pain and skin peeling… the damage to my nerves in the feet is permenant.. I was not told that my hair might never regrow…..I asked about a cold cap and was told that it would not help… I am angry really that I was not given better advice,,,, but I am still in remission .I have sensitive eyes now that react badly to bright light/sunlight , my eyes poured with tears whilst on Taxitare… I believe that these conditions were all caused through the Taxitare…

  31. I’m also suffering from permanent hair loss from Taxotere. I received Taxotere with Cytoxin and Herceptin for stage 1 breast cancer four years ago. Since treatment, my hair grew back but with male pattern baldness and super fine and thin! I used to have beautiful thick and wavey hair but it’s as if a stranger is now is looking at me when I look in the mirror! I kept hoping that it would start coming in again the way that it was but now I know that it won’t. If I’d known of this side effect, I would have chosen Adriamycin instead of Taxotere! If anyone finds a cure, please let me know!

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