Permanent Hair Loss - 2 Years since finishing Chemotherapy

brandyrose · January 2017

Hey everyone,,

I know there has been some topics about permanent hair loss, but it was mostly people asking how long it took other's hair to grow in.

I am 2 years since I finished chemotherapy and my hair hasn't grown back. I'm not saying this to scare anyone who is having chemo, but because I am frustrated and at a loss of what to do. The hair is growing, very very slowly, but not steadily in the same places. The back of my head has more hair than the crown of my head. But I have very few eyelashes, eyebrow etc.

I started to wear a wig, because I can't stand having people ask me a million questions about it. It's really painful to talk about it, and it's hard when people start to tell me that it'll grow back eventually and have patience. Are you frigging kidding me?

It's so easy to tell someone that when you have a full head of hair.. plus it's been 2 years, and I've been patient.

I've talked to my doctor who is as baffled as I am.

However, since then I've done a lot of research and have seen that there are woman suing because of permanent hair loss after taxotere. I took taxotere, and NO WHERE in my list of possible side effects did it say permanent hair loss.. Always it said temporary.

SO.., anyone else experiencing this particular problem? Any solutions you've had? I am 33 years old, and about to go in for reconstruction surgery (tram flap). I am so excited/nervous to get this surgery behind me, but then I still have the frustrating issue of having no hair.

I realize it's probably a small price to pay to still be alive, but it's not easy. Thanks for anything you can all tell me..

Nick60F · January 2017

hi, sorry to hear about your experience. My wife is on TAC and she's lost all her hair, as expected. We were aware of the risk of permanent hair loss, but only because of our own research - I don't believe any of medical professionals mentioned it! in our case we decided to go ahead anyway, but at least we did that whilst in possession of the facts. The information I have suggests the risk of permanent hair loss on Taxotere is somewhere in the range 3-6%. There is information on this at www.taxotears.org

Good luck - hope things change for you.

Nick

KayaRose · January 2017

I've recently been seeing a commercial from a law firm running on tv about permanent hair loss from chemo. Apparently they are filing suit against the chemo company for not advising patients that there is a risk of permanent hair loss. I can't recall the lawyers names or if this is a class action type of lawsuit but it might be worth looking into. I live just outside of Chicago and I think the commercial just ran locally.

I understand your frustration. I did get my hair back and was so happy but then I started on Arimidex and it dbeganfalling out again. I still have hair but nothing like I had prior to all this. I have balding areas that will probably get worse. I spend so much time trying to cover up my scalp that I'm seriously considering wearing my wig again. It was so much easier.

MinusTwo · January 2017

Permanent hair loss is a risk. All my hair came back - thicker than before. I did take 5000mcg Biotin for 2 years since it seemed to help both hair & nails.

Mel2015 · January 2017

I'm re-posting here, since someone pointed me to this thread (thanks!).

I am 46. I have tried to find information about how people are handling permanent hair loss from TCHP regimen, but I'm not having much luck. Anyone here care to talk about what they have experienced?

I had TCHP chemo in 2015 and double mx with diep flap reconstruction after that. Herceptin until June 2016. My hair has not grown back much. Longest pieces are less than 5 inches. I also have very thin hair on the crown of my head, appears like male pattern baldness. I am so disheartened by this. I have tried biotin, and shampoos, and also bimatoprost drops, which seemed to help for awhile, but then I ran out. I am about to start them again. I'm aware of the laser caps, but can't find any reliable information on its effectiveness for this specific problem. Anyone know of better solutions? I may pursue hair transplants, but I don't know whether that would be permanent, and it's very expensive. It seems like insurance should have to cover it!!!

Brandyrose - I can relate to what you are going through! It's so tough when people say "it will grow back" because it seems like it just won't, and they can't understand what it feels like. To be a young woman with this problem is pretty awful. I'm sorry I just had to say it.

I'm wishing you the best for your surgery!

lalady1 · January 2017

Hi Brandyrose - there is litigation against the makers of taxotere for failing to warn patients of permanent hair loss.

https://www.drugwatch.com/taxotere/lawsuit/

You may be able to join one of the class action lawsuits. Below are some links - hoping for the best for you and all suffering permanent hair loss.

https://www.drugwatch.com/taxotere-landing/ Or call (866) 359-1295

http://arentzlaw.com/landings/taxotere-permanent-hair-loss-lawsuit/?gclid=CJPPh5DuutECFU6CfgodHGkNjw Or call 800-305-6000

Lauriesh · January 2017

I have permanent hair loss from taxotere. I have tried everything- biotin, lasers, rogaine, etc. I had my last dose of taxotere 6 years ago and while I have some hair on the sides and back, the top is still bald. I draw on eyebrows and wear wigs. I did join the lawsuit

208sandy · January 2017

I also have permanent hair loss from taxotere - it's been 8 years and it has finally started to "cover" in spots - I was never informed but found out about the permanent loss here on BCO and no "it will grow back" and/or "at least you didn't lose your life" are not things to EVER say to me or anyone else who was given this drug - it is just plain criminal that at our most vulnerable, we are victimized by GREED!

Jackster51 · January 2017

I couldn't agree more 208sandy!

mistyeyes · January 2017

I am on TCHP - I have had 2 treatments - my 3rd is tomorrow. I have to have 6 total. I am praying that my hair will grow back. I am sorry for all of you whose hair has not grown back. For being such a small percentage = it seems like quite a few that I am reading about.

I

Tammibaby · January 2017

I am three years post chemo treatment and my middle is bald and my hairline is gone. Some days it gets really depressing (like yesterday). I have always worn wigs and hair extensions but when you take those off or out and you see your own hair it is very unsettling. Yes, I am happy to be alive, but I also feel we should have been made aware of alternatives.

Meow13 · January 2017

Every night I see the taxotere lawsuit commercial on tv. I am so glad I did not do chemotherapy that was recommended to cut recurrence risk. 5 years NED so far.

lps · January 2017

Does anyone know if the permanent hair loss risk is the same for Taxotere and for Taxol? Is one higher than the other?

brandyrose · February 2017

Thanks to everyone for their replies although there were a few insensitive ones I could have done without.

I have retained a lawyer in Canada for a suit against the company as they changed their packaging after I had taken through chemo. They are recruiting multiple plaintiffs as there seems to be a decent number that this has happened to.

Now it does says permanent hair loss is a possible side effects but when I took it it did not.

I have taken biotin, silica, tried Rogaine, rosemary oil, you name it. Nothing works. I'm slowly getting to accept that nothing will change this. I'm going to look into getting more wigs and look at microblading my eyebrows.

But it sure adds insult to injury.

I'm writing this, lying in the hospital since having my tram flaps reconstraction a week ago, in a LOT of pain but looking forward to the future. But the hair thing is hard.

mizprissy10 · January 2018

I am having the same issues after 6 rounds of taxotere. It's been almost two years since my last round of chemo. I had super thick hair. I now have thin hair with some bald areas. I can cover most of it but have to use a spray that matches my hair color to help camoflauge the bald spots. God forbid it get wet. I'll end up with dark brown dripping down my face. I was always told my hair would grow back like it was. I don't talk to my doctor about it because I don't want to hear that it's not a side effect because that's crap! They seem to say that about every side effect. Anyway, I digress. I am also in a lawsuit against the maker of taxotere. I am tired of people saying I should be thankful I'm alive. It's just hair. Don't tell me how to feel! I am so sorry you have to deal with this. I know how hard it is. I use to love going out & doing things & meeting new people. Now going out sends me into a panic attack. I'd rather stay home. Haven't we suffered enough?!

Janet217 · February 2018

I am 14 months post chemo. I have what I would call alopecia from the taxol called docetaxol! I am very angry to know that there was an equally effective drug and I was not offered an option nor was I told of the side effects of taxol. Now in addition to no breasts I really have no hair! I have used biotin and oils and rogaine to no avail... while I have some hair it is abnormal and feels as such. I had the thickest hair of anyone I knew. It is now this very very fine hair but feels like straw. It hasn’t grown longer than about 5 inches. Maybe more like theee inches. All I see are woman around me with their hair! People talk incessantly about hair as woman... “oh I like how you styled your hair today”, “I love your new haircut”, “did you dye your hair?” Etc etc.... it is hard to hear all the time when all you want are your normal locks back. I have had three men tell me they would not date me because of my hair loss... my job is constantly on the line as patients ask about my health and I don’t look normal and must not be healthy! I stay home now and use to love to get out! I am alive but feel constantly like I wish were dead! I have met no one to ban together with... I have heard nothing more from the lawyers regarding the lawsuit! I want to ban together and take this to the news media..... all of us together...so this drug will be removed! If you are with me call me at 541-337-6161. I think it is timewe raise up and are heard. This drug needs to be immediately removed from the market

Spookiesmom · February 2018

please remove your phone#. Trolls, spammers, wackos can get it!!!!!!

Meow13 · February 2018

Janet, there are other women on BCO that you can contact on private message jackster51 is one.

I was never told about taxotere when it was suggested I take it. I decided against chemo and did AI drugs. My neighbor told me to beware of AI drugs her hair fell out using them and never returned. I didn't have hair loss thank goodness but I think it is a big deal to alot of women.

My2girlies · February 2018

I am about to start my first round of chemo treatments in 2 weeks and Taxotere is one of the medications being recommended. After explaining to my MO my concerns regarding permanent hair loss she told me that her experience with permanent hair loss has only been associated with those receiving the treatments every 2 weeks as opposed to the every 3 weeks which would be my recommended course of treatment mixed with herceptin and carboplatin. Can you please tell me what was your regimen? Trying to decide on taking the less then 1% chance that she assures me is my risk. After reading about your experience I’m not sure, I believe her

Meow13 · February 2018

Can she give you taxol instead of taxotere?

ksusan · February 2018

I have not heard the 2-week vs. 3-week distinction. It doesn't appear in the package insert (http://products.sanofi.us/taxotere/taxotere.html), nor the PDR online (http://m.pdr.net/drug-summary/Taxotere-docetaxel-5...).

Kitkat3036 · July 2018

I did it at 3 week rounds and my eyebrows are still not growing. I'm so lucky with the hair on my head. It's just disappointing that this has been a known side effect and nobody told us. Also I wasn't told it can cause fluid retention. Which I had and still have. I ended up in the hospital for a week because I wasn't making urine. Chemo is no joke.

Meow13 · July 2018

What is suprising to me is that people are continuing to take taxotere rather than taxol.

WC3 · July 2018

I don't think taxol was mentioned during my consultation. Just taxotere every three weeks as far as taxanes go. I would not have been opposed to taxol weekly though if I had known about it. I'm fortunate in that I live near the infusion facility so it's literally a trip down the street for me.

Scrafgal · July 2018

I took taxol and I got my hair back briefly but am now bald. So, no guarantees with any treatment....

misslil · October 2018

I had taxotere every three weeks as part of TCHP treatment. My hair has only partially grown back, not acceptable to be seen in public so still dealing with wig and caps/scarves day to day.

I'm grateful that I've not had any indication of disease since finishing all original treatment, but the hair loss/degradation is hard. I was really emotional about it for a long time. Better now a year or so before I started to recognize I was having a regrowth problem, not just a delayed return to normal. But even now I find it's hard to be around a lot of women. And I don't like that wherever I go, it's visible that I've had this condition and treatment.

My doctor gave me a form before treatment that mentioned hair loss. I don't recall that it said permanent hair loss, vs. just hair loss. He verbally commented that "it will grow back." Which was well-intentioned of him, but not the most accurate from what I've later learned.

JanetMara · March 2019

Hello ladies,

I had taxotere as part of my treatment before surgery in 2017 (THCP) and I lost all my hair,it took me 1 year to grow it and it was beautifully curly.I mixed castor oil and coconut oil and rubbbed on my scalp every after shower.I researched and people used castor oil to the eyelashes to make it grew longer. And I also took BIOTIN(HAIR,NAILS AND SKIN 5,000 MG daily.

Last November,I had to have another THCP regimen and all of my hair was gone,I am beginning to regrow and started using castor oil and coconut oil massaged to my scalp every after shower and I started taking HAIR,NAILS and SKIN again. Hopefully it will work for everyone as it did to me. But BIOTIN interferes with your lab test results,(per poster in the lab), so its good to avoid taking BIOTIN until after your blood test.

Permanent Hair Loss - 2 Years since finishing Chemotherapy

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