Taxotere and permanent hair loss????

I am 19 months post taxotere and I have NOT grown back my hair on top. I just turned 39. I'm too young to look like an old hag. This has been almost worse than the cancer. I want to punch anyone who says, "who needs hair, you're alive!" It's always said by someone who has hair. I would love to trade places... no boob, scars everywhere and no hair. I wasn't told of this side-effect. I want my life back. Nobody understands. I'm tired of looking like a permanent patient. I'm tired of people looking at me with pity, and I'm so f---ing tired of wigs and hats I could SCREAM (and do on a regular basis). I just got married 5 years ago. I want to feel sexy again. It's never going to happen.

At least my doctor agrees it was the chemo. I was her first patient to have this problem. She has since had others and has stopped prescribing it because of this side effect.

If your doctor precribes Taxotere, say NO. Trust me. I had a full head of thick, gorgeous blond hair before this, and there is no balding in my family. They HAVE TO take this drug off the market.

Thanks Lago. I am seeing someone but it's difficult to get beyond this. I just got reconstruction so at least I have a new boob and a flat tummy but I honestly don't know how I'm going to live the rest of my life without hair. I didn't appreciate it enough when I had it!

Weerah, I so feel for you.  I, too, was 39 at diagnosis.  We have special concerns and needs as young patients.  Menopause plays a major role in all of this--they are just starting to uncover what going into chemopause so abruptly and young can do to the body.  It is HARD.

My hair did not come back the same.  I got my hair back, but I have significant receding hairline, and it is embarrassing in the window down car weather.  I am not exaggerating, I've taken this whole experience in stride and paint my eyebrows back in with just a few posts complaining about it ; ) 

Taxotere is clearly the culprit in many cases.  However, it is a more powerful drug, and that is especially true for younger patients.

How can we support each other through this trauma? Weerah, I understand what you feel! Would you consider a good wig?  I have decided if that is what it takes, I will go there. Some women who wear wigs report they get a lot of compliments on looking younger as the hair is shinier.

I have also debated a small nip and tuck procedure.  My eyes are much darker and baggier since treatment, and I'd like to have them lifted.  I plan to visit a plastic surgeon this summer to suss it out.

You deserve to feel good about yourself.  Your hair is not the only way to do that.  Think about a wig and other avenues for feeling good again.  Many cultures wear wigs as a matter of course--it's us white ladies that seem to have "issues" with it!

It was interesting, we talked about different chemo regimens for me, but my oncologist was clear that for my age, Taxotere has an advantage.  Permanent hair loss is just one of the many issues it can induce. 

My "theory" on Tax--it kills the soft/fine hairs.  My "receding hairline" is actually like my brows and lashes--it was the softer hair at the temple.  I always had less hair in that area, now it's just straight up bald.

My feelings, I'm sure like everyone's, wax and wane.  I have PTSD--heading into my MRI and mammogram in August, and get sick to my stomach even thinking about it.  I now drug myself for these tests, as the last time I nearly had to be taken to the ER I was hyperventilating so badly.  It is out of my control.

Other days, I feel like my life is back on track.  But I'd be lying if I said that I wasn't reminded of my experience every morning when I paint in my brows.  I wouldn't change my choices, it was the right choice after painful research in a time when so much is changing (Oncotype, Tailor X, etc.) Some days, the vanity issues are the ones closest to the front, and that's okay.

Survivor I know you guys so that would be a no but from the research Robo has done it sounds like this can't be reversed… but that doesn't mean that something might be out there in the future that can cure it.

Carol some of us are HER2+. Many of us get Taxotere with and without other chemos like Carboplatin and we do get Herceptin. Herceptin is hard on the heart. Giving it with Adriamycin increases the risk of heart damage. Some oncs choose to give Adriamycin but will not administer it at the same time as Herceptin… which means you have to wait to get Herceptin.

I know I didn't want Adriamycin because of the risk of heart damage which even without hercepin has heart risk. I think my onc feels that hair loss is a less serious SE than heart issues so that's why she chooses the Taxotere route first. But if I experienced severe SE on Taxotere I'm sure she would have switched me to the Adriamycin regiment.

Also note that Taxol has worse neuropathy issues than Taxol. I do have a little permanent damage on my left heel (nueropathy) but not bad. I'm sure I would have had serious issues with Taxol.

All these treatments leave us with lasting damage. We need a better medications to fight this cancer crap.

Carol

There was a study which showed better survival with TC chemo than with AC chemo for early stage breast cancer. Taxanes have become quite popular with some oncologists for 'curative' chemo, even for stage 1 breast cancer, since their effectiveness has been proven in studies.

I have node negative breast cancer and did 4 x TC chemo. As you would know, even with node negative tumors, there is the possibility (averaged out to about 20 - 30%) that tumor cells have slipped through the nodes undetected and will go on to cause distant mets.

As part of my chemo, I did the 4 docetaxol (taxotere), finishing about 4 weeks ago now. 

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FOR LADIES READING THIS PRIOR TO CHEMO:  HAIR LOSS with TC chemo

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I lost about 80% of my hair with the first round of chemo. Then another 10% with the second round. After chemo I had about 5% of my hair left. I did not shave that hair. I tied it into a short thin ponytail at the back and pulled my wig over the ponytail to keep the wig secure and prevent it from slipping up the back of my head. Also I brought the hairs at my hairline and my sideburns out to make my wig look more natural.

Now 4 weeks after my last infusion, I find a heap of white fluffy hairs that are between 2 mm and 2 cm long. This white fluff is still sparse. One closer inspection, I also have little black hairs that are only 1 - 2 mm long and sparse. I did not lose my hairline above my forehead and surprisingly, most of the fine fluffy hair at my temples have never fallen out. Have slight thinning of my eyebrows and eyelashes at this stage, and I don't believe they will fall out. I'm trying FEG eyelash on eyelashes and brows to try to bring back their fullness.

I did zoladex also during chemo. So my estrogen was at post menopausal levels during chemo. No hair thinning prior to chemo.

I am in my early forties and I'm half asian (and half caucasian), so my hair might be coarser or something. It was very thick, brownish black and has quite a lot of grey for my age. As I said, it has started growing back already even 4 weeks post final chemo. But I still don't know whether it will grow back fully. I just started biotin 1000 mg per day, and women's rogaine to stimulate hair regrowth.

I iced my hands and feet during taxotere. During the first round of chemo, my hand on the arm that they put in the drip into was not quite cold enough when the infusion started and I had some shooting pains (neuropathy) in a couple of my fingers for a week or two afterwards. For the next 3 rounds of chemo, I asked the nurses to wait until my hands were frozen to start the chemo infusion and I had no problems whatsoever with neuropathy or fingernails/toenails. I don't know if icing would be as effective with taxol, but I'm worried that women are not being advised about icing and some may be experiencing neuropathy where it could have been prevented. Also, I had ate ice before, during and after docetaxol, which reduced neuropathy in my tongue and it may have also helped me avoid mouth sores and loss of taste.

Prior to chemo, when I asked my Onc about the possibility of permanent hair loss, she outright assured me that my hair would definitely grow back. I already knew that permanent hair loss was a possibility for me, but I decided to take the risk anyway. I think the average chance of hair loss not being permanent is at least 93 - 96%. At the time of my diagnosis, my son was 4 years old (and still breastfeeding), and I needed to avoid neuropathy so I would not have asked for taxol instead of taxotere. Other women would have, and it's sad that they were not given the choice. 

My heart goes out to you women who have experienced permanent hair loss. I believe in my own heart that all of you are probably much more beautiful than you know - but I'm sure that doesn't help. My hair did come in after taxotere - curly (it had always been straight) except for one part that's really straight & very grey (was before too). As far as eyebrows and eyelashes are concerned, I do know that it's possible to have them tattooed on - for the eyelashes, at least, this can be very beautiful & eliminate the need for eyeliner. Personally - I'd say that if you can't wrap your head around (sorry no pun intended) wearing a wig - then wear that bald head with pride. There is a beauty to it if you can find it - although I know our society doesn't think so. 

I had 6 rounds of TCH and have permanent male pattern baldness. It is beyond devastating and I would give anything to be able to go back and not have taxotere. 

2ndtime4me I found out after my 1st TCH treatment too. I was 49 at the time and  had already had issues with a receding hairline (mom & sister have it too). Was already doing women's minoxidil before diagnosis for a couple of years. I assumed it would happen to me. Well it didn't. I had 6 rounds of chemo and the full year of Herceptin just like you are having. I don't believe it has anything to do with baldness running in your family. Ironically some of the hairline that I had lost before chemo came back.

I am 34. Also, no family history of baldness. 

Jumpy,

Hi, I am so sorry to hear you are having trouble with your hair as well. I know it is only hair but as women it is so much a part of our identities that it is hard to imagine ever feeling normal again without it.  I am trying to find the hair, hair, hair thread but am new to using the site and still not very good at navigating it. I am going to try to figure out how to post some pictures as well. Basically my hair appears to be re-growing normally on the bottom but is almost nonexistent on the top of my head. My oncologist has had several other young women who this has happened to and when I saw her at the six month post chemo mark felt that my hair loss was likely to be permanent as well. I am also having trouble finding anyone with any expertise on the subject. Most dermatologists have never heard of this happening.  I have an appointment with a dermatologist in two weeks but I am not sure how helpful they will be as I am a healthcare provider myself and have read everything published about the subject.  I do feel that latisse saved my eyelashes and eyebrows and I have been using it on my scalp for the last 4 weeks.  It takes 8 weeks to see any hair growth with latisse so I am not sure yet if it will help but will keep you posted. I also use 5% minoxidil twice a day. It does not seem to help but I am afraid to stop using it. Lastly, I use coconut oil on my scalp and it may be my imagination but it does seem to help. 

Boy, I sure feel for you all. My hair has come back, but I think tamoxifen may be making it thin out some & it was never that thick to start with. I'm not a person who thinks much about my looks and I was never 'pretty' in the first place, but being bald during chemo was hard, hard. I know some women who actually look very nice with their heads shaved & who have done it deliberately, but for most of us it just looks wrong. And I also think that our own feeling of insecurity about how we look make it even worse because we think people are judging our look probably more harshly than they are.

I guess what I I am trying to say is that I bet that you are all very beautiful women with or without hair. I'm thinking that if my hair does thin out a lot - so that I have bald patches, I will shave my head, maybe get a beautiful abstract tattoo on the back and try to be bald with pride (along with having some great hats and maybe turbans around). I wish that how we look did not affect how we feel so much because in a weird way how we feel in turn affects how we look. Sending you all many hugs.

Jumpy,

Hi, I sent you a private message. That was a very good review of the literature. I am a physician (but not a dermatologist or oncologist) and had also come across all of those articles and agree with your interpretation. Last night I also found a very interesting article about parathyroid agonists/antagonists.  Google PTH-CBD and alopecia and it will pull up.  I have already contacted the CEO of the company who makes it and they said no human trials now but perhaps there is some hope in the future. Do you think the hairmax laser comb is helping? I am also taking biotin and had thought about propecia but I am a little nervous to take it in the setting of breast cancer. 

I used the Penguin Cold Cap, but it sorta saved some of my hair.  I  had 4 treatments of T/C, and after each treatment it would get thinner and thinner, but I couldn't bring myself to shave it all off.  I had to cut my hair short because it was falling out like crazy.  In the end, I had a huge bald spot on the crown and super thin everywhere else.  The good thing was that since it's winter, I could wear beannies and caps with my hair still showing from the bottom part.  I finished my chemo on Dec 5, 2014.  My hair started to grow about 6 weeks later, it's still super thin and babylike, but at least the shiny scalp went away.  So with the new hairs (about 1/2 inch) and the ones I was able to save from the cold cap (about 3 inches) blend together, it looks pretty decent, but at 10 Weeks, I still don't feel comfortable without my beannies/hats, because I can still see my scalp a little.