Wednesday, March 28, 2012

New site on permanent hair loss related to chemo

A group of women with permanent hair loss after chemotherapy have started a site, A Head of Our Time, to spread the word, support others with this condition, and look for a cause and remedy.  All of the women who contribute to the site—more than 40 at this point—took the drug Taxotere.  According to one of the site's creators:
We are not doctors or researchers.  We cannot tell you the best course of treatment for your cancer.  We cannot tell you what percentage of women are affected by permanent hair loss after Taxotere.  What we can tell you is this:  we have experienced permanent hair loss after using Taxotere.  We have been deeply affected by our hair loss and want to warn others.  We want people to PLEASE Ask their doctor for the facts before they or their loved ones make a decision to use Taxotere.  And PLEASE help us spread the word so women can make informed decisions about their treatment.

8 comments:

Love changes everything said...

Well, we have another one - me - I too have lost my hair permanently and never told of what might happen. I wouldn't have chosen different treatment because it saved my life, although I think disclosing all the possibilities should have been stated.

Carolyn Chapman said...

Me to, I had my last Taxotere chemo treatment in April 2012. I had TNBC early stages and a double mastectomy. My hair never grew back and I am to this day August 22, 2014 trying to find out how to fix this terrible side effect. Anyone out there that has succeeded after two years to grow hair back and how did you do it ???? HELP

Julie Bayless said...

I took Taxotere in 2008 and my hair never came back. I wear a wig and am thankful to be healthy.

Lisa D. said...

I had taxotere treatment in August of 2010 and have been working hard with a naturopath to manage all of the late effects of the chemo. I was not able to digest food for 2 1/2 years. I tried $4000 worth of laser hair treatment - to no avail. I can actually tell you now that the chemo is completely out of my system. I am using a lot of nutrients that my body can now absorb and I am finally growing my hair back after 5 years. It's been a very long and sad journey but I am really hopeful that the hair follicles can all be regenerated. So far I have a very thin covering all over my head and though the progress is slow, it appears to be steady now. There is hope ... you just have to find out exactly what damage the chemo did to your body. The first time I saw the naturopath was several years past the chemo and the first thing she told me was that the chemo was sitting on top of my liver and that my thyroid was barely working. This was determined by her use of microbiological analysis of the blood.

jeneccles said...

I finished my Taxotere Nov 2014 and have just received the devastating news that my hair won't be coming back, at least not in any recognisable form. Apparently there is an alternative - Taxol - which doesn't have this side effect but has to be administered weekly rather than 3-weekly. I was never given this information or the option to choose it. I know I am a survivor but I am resentful that my choice was taken away from me at a time when I was clearly vulnerable and had faith in the medics advising me. Now I just want to find a way to accept my bald self ... it will come but how long it will take I don't know.

Patricia Prijatel said...

Jenneccles: I hope the docs are wrong and that your hair does come back. I know for many women hair regrowth is slow, but slow is better than nothing. Also, Taxol also causes hair loss, so there's no need to beat yourself up about not knowing that alternative. (Actually, there's no need to beat yourself up about anything.) Meanwhile, embrace your overall beauty and love your sweet bald self. And I hope this hair loss site helps you. Hugs. Pat

jeneccles said...

Patricia, your words are so welcome. I have adopted the 'never say never' attitude alongside the 'doctors are not infallible' one so I am feeling positive and determined to enjoy my life and make sure the people I love really KNOW I love them. Thank God for people like you with your positivity xxx

Patricia Prijatel said...

Great attitude. Cancer can really teach you about love. It did me. Many hugs. Pat