Topic: taxotere and permanent hair loss

Many of us here have suffered from temporary and/or permanent side effects from our cancer treatments. I, personally feel that your comment is inappropriate for this forum. I doubt that there is anyone here who wasn't willing to do whatever was necessary to save their life. I doubt also that they were purposely misled or misinformed by their doctors. If I'm wrong somebody please tell me and I'll stand corrected.

Do you have a lawyer friend who needs something to do or a child needing college tuition?

There are some differences in side effects of taxol and taxotere although both are from the same family of drugs. I was not given the option of drugs but with taxotere I experienced the 'uncommon' side effects: [mine was complete] nail loss, [extreme scarring] burn-like skin rash on hands and arms, [permanent] hair loss.  My doctor did not know that I would experience the extreme reactions because they were not reported by the manufacturer.

okblessed - that's terrible!  Did you make it all the way through taxotere treatment?  I hadn't heard of the permanent hair loss happening...I'm so sorry it happened to you.  When I took taxol I had the feet-peeling thing, I forget what it's called, and my doc and I discussed reducing dosage....in the end we didn't, but now with liver lfts that aren't yet normal I wonder if I shouldn't have gone for the lower dosage....but who knows.

I know I read the rxlist very detailed description for taxol and don't recall anything about permanent hair loss - if that isn't there for taxotere, it sounds like it might be time for it to get in there. 

Folks who are anti-lawsuits - sometimes it's not just about the injury, it's also about making sure that it doesn't happen to someone else, and making sure people have adequate warning.  Kind of a public service.  If women who had a choice of which chemo drug to take knew that in .005 % (for example, random guess) of cases for chemo drug xx there might be permanent hair loss, would it change their mind about accepting that risk?  Maybe, but maybe not.

For example, previous to getting cancer I was enrolled in a fibromyalgia drug trial with a growth hormone secretagogue - that, despite having an intense family history of cancer.  I shouldn't have been allowed in the trial, but I was too naive to know that.  Turns out that the growth hormone secretagogue may well have helped the tumor to grow really fast (one year it didn't show up at all on a mammogram, the next year it was 2 cm + scattershot DCIS), despite the fact that it was a low-grade tumor..... Who knows what causes cancer but I may well go after the pharmaceutical company just so that other women with family histories like mine get adequately warned and screened out from taking drugs they shouldn't take.

okblessed, sending hugs and support your way,

Thank you for understanding that it is not about getting money from a drug company [although some wig money might help!]. Many times drug companies are not truthful until they are forced to be. While going through treatment we don't always think about anything past living through the day. I just wish I had had the option to use a cold cap or some of the pressure caps to help with the scalp area. I live where it is often very warm and extremely windy. My wig actually blew off in a walmart parking lot and I went straight home and didin't come out for 3 days. I know that is silly to some but trying to rebuild your life as a single 'bald' woman is emotionally difficult. Not discounting any of the difficulties that each of you have gone through.

And about the lawyer comment from the other lady - yes, I divorced a lawyer and that is why I raised my son alone and without child support. My lawyer husband did not want children and I refused to have an abortion.  I have a great son and am proud of him.

Thanks AmyaM for understanding that sometimes we have to do what we can to protect others.

Blessings to each of you.

I didn't mean your child, I meant the lawyer. Sorry if you mis- understood the question.

response to RIV54

I have a number of lawyer friends but none that specialize in class action medical or pharmaceutical suits.  Latest research shows , according to my oncologist, that 4-5% of women receiving taxotere are experiencing permanent hairloss.  This is a significant number of women.  My question is what other side effects may be caused by this drug that are also not indicated.  Without class action procedures the FDA may never be alerted to the possibilities that an investigation into side effects is indicated for this drug.

Does anyone know if this permanent hair loss SE is only from Taxotere ... not Taxol?  Thanks!

okblessed ... do you have any specific website references that you could give us?  Thanks!

Wow, I had four treatments of taxotere. I had headaches and temporay hair loss, but I have more hair now than I did before. I think it might be an unusual and uncommon side effect. Taxotere saved my life and it also gave me a beautiful complexion. Just thought I would chime in. Kathy

Hello everyone and Happy Easter! I am so blessed to be celebrating this time of the year.  Yes, I gained weight and had extreme se but have forgotten most of them - the only lingering one is the hairloss.  When I get back to my office next week I will try and list some of the research sites.  My doctor has some that he might share [open to physicians only].  I go back first week in April to see if spot on my lung is scar tissue from radiation[what I am believing!].

I really appreciate the encouragement from everyone - even though my se were extreme - I am through most of them. Hopefully we will be able to comfort others who experience the same difficulties. Most of it is like having a rough time in labor --- a couple of months after holding your baby, youhave completely forgotten those labor pains:)

Here is to a new day filled with wonder and a new appreciation for all  the things in our lives!

okblessed, I was shocked when I read your post. I thought I was the only one who never re-grew hair after taxotere. Someone once mentioned it was the Femara, but that's not the case because I switched hormonals. It's been a year and a half since taxotere and I've grown maybe twenty hairs on my head (I'm sure if I let THEM grow, they'd be two feet long by now). No eyebrows and no eyelashes ever returned.  I must say when I started this whole cancer thing, I swore to myself that I wasn't going to die bald....seems taxotere stole that option from me forever.

Hi Pam - I am  'Pam' too.  I have started using Nioxin to shampoo my 'head' with and I use vitamin e on my eyebrow and eyelash area.  I use a large massager on my head each evening to improve circulation. The dermatologist has me on minoxidil [generic rogaine] --- I have baby fuzz over most of my head - top still sparse.  Problem is that fuzz causes wig to slip so I have a 'hair' cut every month or so.

My eyelashes are coming in and I actually have more eyebrows than I can count now!  Praise GOD!

There is hope but I believe it is through prayer and belief in God that my hair will return!

I keep a champagne glass on my nightstand with the [not synthetic] 'e' gel caps in it. I puncture one and use it on and around my eyes every night.  It does great to keep wrinkles away and seems to be helping the hair grow.  I close my eyes, warm the gel cap in my hand then dot it on.  I take 'liquid' [not synthetic] 'e' oil from a little bottle and massage into my scalp.

I am not sure if the minoxidil or nioxin work  BUT since I have been using the 'e' and the nightly massage I am getting fuzzy hair filling in.  My doctor asked me if I was getting 'nose' hair --- an indicator that 'head' hair will return.

Hi MaryAnn - I am the other Pam and have only used it this past year.  I had 'extreme' reactions to taxotere and even lost all my nails [keep yours trimmed very short].  You may not have nearly the reactions that I did.  My doctor had to cut my dosage way back after the first treatment. I would certainly ask about the cool cap, my friends in the UK have had much better luck preventing overall hairloss by using that method.  And again, the dermatologist recommends minoxidil [generic from Wal-Mart].

I had very thick, strong hair before treatment so this 'fuzzy' stuff that does not cover my head is strage for me - actually it is my only reminder.

My only issue is that we should have been warned about the possibilities of permanent hairloss by the manufacturer.

Hi!  Maybe it is just us 'Pams' that have the hair problem! I sure appreciate hearing from everyone - now I don't feel so alone.

Anyone have unique ways to cover their heads? Oklahoma gets to be about 120 in the summer and I am not looking forward to a wig.

Ideas? suggestions? scarf tying classes? cute hats?