taxotere and permanent hair loss

I tried sending an e-mail, but it didn't work.  Do I need to do something different?  I'm somewhat computer challenged so help me.

Thanks 

RNKaren I have your hair too and its been 16 months since my last chemo same chemo too and my hercepten ended 4-21-09 I have quit a bald area around the crown it does seem like since I encreased my water pills to 7 a day my hair has bloomed alot more maybe I am hoping spring it will make it all sprout like the grass. I am going to my 2nd derm in Feb also. I have decided as to look like somone from the nursing home which I am only 58 single too I will have to look into extensions but they sure wont be what Kate Goslins ha she has been all over the news today.I just want something permenant no wig thing but I will only be able to do this if my ins. will pick up on it since it was caused by chemo never had the problem before I had thick curly or wavy hair and lots of it and this is black baby hair and see he scalp and also straight awful. I do pray for all of us on the site and for all the ladies dealing with anything with cancer its a devils sickness only the devil could give this to us and I pray for our grand daughters and daughters to find some answers.. have a good weekend snow and 20 below in MO

Maura

Maura,

Are you are going to a dermatologist for hair loss?

Hi RNKaren,

I just celebrated 5 years of survival following chemo (Adriamycin, Cytoxin, Taxotere).  I still have male pattern baldness and wear a hairpiece.  I'm still hoping that one day the hair fairy will visit and I won't have to wear a hairpiece or a hat anymore.  Glad you found us.

Elaine

Do all the ongoloigst go to a class and put on the same face I DONT KNOW WHAT CAUSED THIS I HAVE NEVER SEEN THAT HAPPEN BEFORE hmm I am 18 months out and still have to wear a cap not enough hair and flat and limp...

I think there is a secret memo that tells them all what to say and how to look equally perplexed about it.   I wish someone had been honest in the beginning and let me know there was this possibility.  I am an adult, I can weigh the odds and make decisions.  Maybe i would have chosen this if they convinced me that this was the best treatment for possible cure.  I am a triple negative so the targeted methods available in August 2008 didn't apply.  But I was the same profile 21 years ago and got my hair back!  Maybe sometimes the old methods are the best.  Anyway thanks for the e-mail and I will e-mail you to get linked up with the others in this same boat. 

Barbara

I just read the article the Globe&Mail.

I feel gratitude to the continued pressure by the women who have suffered a truly devastating result to their self-image from the taxotere treatment regimen. 

The way I see it is that not only do they have to suffer the feeling of the disfigurement of permanent hair loss but when they try to get some redress by calling attention to this potential result (that may benefit others when discussing treatment options) they have often been belittled and treated dismissively by many in the medical community and women like ourselves who who should show some compassion and gratitude.

I think these women (especially shirleyl and okblessed) should be admired for their tenacity in this fight for more accurate information from drug companies and caregivers.

I had FEC and Taxotere, although Taxol was considered, and I cant remember why it wasn't the one chosen.  I'm so lucky that my hair did come back, but if I'd known there was any evidence showing that it might not, with taxotere, I certainly would have demanded taxol.

I hope this article ends up in every Cdn oncologist's office and for those of you outside of Canada, I urge you to print it out and take it with you for your next visit.

Helen, I hope minoxidil helps you, but do look into hair extensions -- I'm amazed at how cleverly they are attached and look like one's real hair.

Hugs to all,   Linda

It has been 10 months since I was treated with taxotere (TCH).  Like others among us in this thread, my hair was very very slow to come back and didn't start to grow until about 4 months after the last treatment. I now have about 1 1/2 inches of hair, it is baby fine and very thin on top and crown. I have a few stray eyebrows and eyelashes.  I am so distraught about it.

Like many of us, I too feel that we have been misled about what can happen to us using taxotere and wonder why we weren't treated with Taxol. If the side effects are worse on taxol, I would still prefer that as at least the side-effects end. With permanent damage to our hair, there is NO END.

I'm wondering if all those who have written who have had similar outcomes to mine have told their oncologists that this needs to be documented with the FDA as an adverse event. Having no eyebrows, eyelashes and very thin hair is very hard on us and changes the way we see ourselves from now on.  It is a BIG LOSS to us. We want this to be taken seriously.

Perhaps then, our oncologists will be better informed because the data will be there. If none of us make it known that we have been devastated, disappointed, hurt by what has happened to our hair, this lack of information will continue to raise responses such as: "Gee, I never heard of that before".  With the data/information collected, there is the chance that other women will not have to suffer this fate.

I'm glad to see this thread is still alive and well!

I just read the Globe article mentioned in one of the previous threads. I am glad to see there is more attention being paid to hair loss after taxotere.

I had six rounds of carboplatin/taxotere in 2007 and a year of herceptin. A little math tells you that it has been almost 3 years since I lost all of my hair. I have been more fortunate than many of you in that I have had my hair return but it has been a very slow process. Needless to say the doctors really could not explain the cause other than the normal hereditary, menopausal possibilities. I still have a lot of thinness at the top but it appears that the regrowth/thickness  improves from the bottom up, if that makes sense.

I did start taking biotin one year ago which was actually recommended by friends who were taking it for their own reasons, not cancer-related. I really think it has helped. I am seeing the oncologist today and will ask about rogaine. A friend suggested that as I didn't realize that it is available in pill form.

I read somewhere on this site that it took a woman 5 years to have her hair return to normal. I know that may not help those who have lost all of their hair. I do really feel your pain as it is the last thing any of us need after having gone through treatment, etc. and it is hard to move on. The medical community should realize this when recommending the drug for treatment.

Hugs to everyone!

I am meeting with my oncologist this week. I am scheduled for 3 x FEC and 3 Taxotere. I am not going to take the Taxotere. I will ask for an alternative.  The nurse I spoke with did not like my questioning the regime. She said it is the gold standard of treatment and she has never seen anyone with permanent hair loss. It might be an interesting appointment.  I have my second FEC next Monday.

No. It is my understanding that it is 3-6%, but I don't want to take any chances.  I figure I would never win the lottery, but I would be bald! I think most women are absolutely fine, but I am afraid.  I think I am more afraid of Lymphedema, baldness, and other side effects of Chemo than dieing of cancer!

I used Nixion and it didnt help at all i dont think now I am using Wen and it is making the hair I have healther you have to order it on line but Salllys has a kick off of it they say its the same. My hair was thin still is but a little wavy now it was not before WEN and I only use 4 pumps of it because of the hair loss. Good luck we at Taxotears know where you are coming from for sure...

Maura

I meet with my oncologist tomorrow and am going to ask for an alternative drug.  I was thinking of Taxol.  Both drugs seem to have awful side effects, but I just plan to take one day at a time.  I know if I had a bad reaction to Taxotere, there would be another choice, so I just want that drug first.  I am interested in seeing what he suggests. I am sure he will not be happy about the appointment.