Hair loss over 1 1/2 yrs since ending Taxotere Chemotherapy.

Hi, I am very sorry to hear of your situation. There is a forum here titled 'permanent hair loss after taxotere' or similar title. Check it out.



I hope that your hair grows back.

Hi, unfortunately it seems to be a problem for many of us. No one warned me. It is very upsetting. I've been to several doctors and no one can help. I had my eyebrows tattooed on and they look good. But, unfortunately, the damage to our hair seems to be permanent. Even the little bit of hair I have is very damaged. I have to wear a hairpiece all the time.

is this true for taxol also?

I was treated with taxotere five years ago and my hair is just now growing back - there is length but I have a receding hairline now and bald spots on the top and back - I have been wearing hats and a wig.  I do have eyelashes but they are very sparse and eyebrows that need help - I was on an AI off and on for the five years - mostly off as I had so many se's but now four months after the last AI the hair and nails are growing faster than usual, the good news is that the hair on my arms, legs and underarms is still almost non-existent.  I don't think they use taxotere much any more and no I wasn't warned either.  Soooooo frustrating!

HVV, I am so sorry.  Yes, there are other threads about this issue.  I just wanted to add my thoughts, as I did TC x 4.  I had fantastic lashes and brows, they both are like an 80 year old's now, very stubby and sparse.  Also, I had a pronounced hairline before with finer hairs that never grew back, which makes it look like a receding hairline now.  I hate it, and it makes me very mad.

What really, really makes me mad is all the hair I used to wax came back fine.  I mean, come on.

It took me three years to really get bob-length hair that is even close to what I had before.  It also is somewhat thinner.

It's hard to accept, because drawing in my brows reminds me of my treatment every day.

They definitely still use Taxotere.  Taxol is a different protocol, reserved for the +12 for node positive, for instance, at my hospital.

It is, but I got PCR with it.

We need to be careful about what we say, as there will be women who are about to start treatment and are very vulnerable.

Taxotere is a drug with better outcomes in general in certain clinical environments, and especially for young patients.  It is a powerful drug in the fight against aggressive cancer, and our young sisters--I was one--really need as many options as possible. I got three opinions for treatment, two were at major research hospitals, one was at U Chicago, probably THE leading research hospital for BC.  All of them use the TC regimen.

Hair loss stinks, there is no two ways about it.  But I wouldn't recommend anyone choose their chemo regimen on that basis, particularly for people with aggressive cancers. 

Carol, that is a gross misinterpretation of my post, perhaps I should have been clearer I was responding to a previous post.  My oncologist handed me a full packet on Taxotere before I took it, I believe they are required by law to do so.  It stated clearly that there is a risk of permanent hair loss.  And I was well acquainted with the problem by reading here online.  Further, I have experienced damage to my hair as a result of my treatment.

That said, I am a high risk, young patient. Taxotere was the right choice for my cancer care.  I am not telling people what to do, I am saying that it is not correct to say this potentially life-saving drug "should never be used", per an earlier post.

I am extremely concerned for all of us who experienced hair loss and problems.  It is a horrible thing, and I am here to support people who experienced it.  It can be a huge self-esteem problem. I apologize if my post was misread.

The question I have is how many here were told that there could be 'permanent' hair loss.  Back in January, several weeks after I finished A/C chemo, my MO wanted me to go on Taxotere immediately, and I do mean that very day.  There were no packets of information, no warnings at all about 'permanent' hair loss -- I already was bald from the A/C.  Not a single mention.  So he either broke the law if there was one, or there isn't a law about full disclosure.  I am curious how many ladies here recently taking Taxotere were actually informed in advance about 'permanent' hair loss.  Hopefully they won't be part of the 6%, but from my own experience, were they even told?  I wasn't, and that was this year.

As I said in a much earlier post, I declined Taxotere for health reasons other than the hair loss issue, in addition to having already done spectacularly well on the prior A/C and saw no need to take additional risks with so little potential returns.

The funny thing is, I was already all over bc.org by the time we had the chemo talk!  So I was asking very specific questions about Taxotere.  Like Rozem, my oncologist gave me paperwork which she urged me to read carefully.  I asked her about the hairloss.  She said in her practice no one had ever had permanent loss.  That's cold comfort, I paid more attention to what I heard here.

I think doctors can't possibly cover every SE, per Rozem's other points. They are required to provide info, like the drug companies are required to provide the prescription insert.  One thing I've learned about my doctor is, she deals with things as they arise, her first order of business is to keep me from dying.  That does not excuse the overlooking of important info, it just means that she can't have all priorities on the same page at the same time.  I guess I consider that up to me.  Truthfully, though, even after all my research online, I always come back to her basic recommendations. 

In my case, my SEs are an interesting bag of tricks.  I got cording--no one warned me, and my RO didn't even understand what it was.  Fortunately, I had PE covered as part of my treatment.  All of this really points to what a full time job being on top of treatment is.  My heart goes out to the ladies who are not as privileged to understand or have access.

My issue is solely about disclosure of permanent side effects, not about the usefulness of Taxotere for many cancer patients.  I feel any side effect that can affect 6% of the users is an important point to be made prior to chemo.  It certainly wasn't made to me, so I do have personal experience.  But I do remember well the warning about heart damage with Adriamycin, which is only 1% by comparison. 

For those cancer patients who are not Internet savvy or even have a computer, I guess it's just tough luck that they didn't get warned.  Somehow, it's seems to be THEIR responsiblity rather than their doctors' to get accurate drug information.  That sucks!

Carol

Carol, I did 4 rounds of T/C last year. My onc never said anything about permanent hairloss from Taxotere, and the info booklet did not use the word 'permanent' in regards to hairloss. After chemo was done, I discovered these boards when I was desperately looking for info, because my hair just did not start growing back, and I always had very thick, healthy hair. To my dismay I read that Taxotere causes permanent hairloss in 6% of people, and I was beside myself with worry. When I mentioned this concern to my onc (more than once) he simply laughed it off, and would not hear of it. I like my onc a lot, but felt cheated, and was very upset that this was not disclosed to me upfront.

 8 harrowing weeks PFC peach fuzz started to appear on my head, it grew back, and within a few months it was back to normal. A little thinner on top, and I also have to use an eye-brow pencil now, but I have hair for which I am very grateful, don't get me wrong. However, oncologists should give their patients this info, and let them make their own decision. Some will take their chances with Taxotere, some may choose another chemo drug, but THE CHOICE IS THEIRS TO MAKE. It is just not right to withhold this crucial info from patients, and I don't understand why oncs do this.

Cbm, I find it very interesting that you were told that Taxol is stronger than Taxotere. My onc told me exactly the opposite. He gave me the choice between the two, but strongly urged me to choose Taxotere. He maintained that Taxotere is a newer, better drug than Taxol, and that it causes less neuropathy. Now I am more confused than ever. What is going on with this? It is all beginning to feel like a big scam to me.

Cs don't discount the effect of the Arimidex too, it has more of an effect on hair loss than most seem to give credit. It was when I started on the pill three years ago after rads that the new hair that had been slowly growing back started receding and thinning. The rate of loss plateaued after about a year but I noticed earlier this year after stopping the anastrole for a few weeks and then starting up again, (i'd fractured my wrist and wanted to think) the hair started thinning with a vengeance all over again.



But my husband who went through cancer surgery just before me wasn't even offered adjuvant chemo, and the cancer came back, stage IV. He took part in one clinical trial with taxotere as the control drug, same dose that I had, ten cycles in all and he didn't even lose all of his hair, probably because the hair follicles were fried from a previous chemo, but still. He didn't survive though, and I did, at least so far, so I take that as some small blessing when I look in the mirror at my hair and eyebrows each morning, I've given up trying to make things better. I'm 69 so perhaps it's easier.

I finished Taxotere and Cytoxin almost 3 years ago.  I am one of the 6%.  Eight months ago I switched from Arimidex to Tamoxifen in an attempt to see if the Arimidex was the culprit.  Not.  I have had tests for thyroid, iron deficiency and autoimmune disorders.  I've had a scalp biopsy.  I'm fine - just bald.  I had permanent makeup (eyebrows and liner) done about 2 years ago.  Recently, I've been wearing lash extensions.  They make me very happy.  I've buzzed my hair after 2 1/2 years of trying to make a silk purse out of a sow's ear (Rogaine, hair color, snake oil, and this and that).  I find it easier to wear a wig with my hair short like this and frankly I feel better with this look than as one woman described herself, the crypt keeper look.   I do not go out of the house without a hat or wig because I look like a freak. 

Had I been warned about this, I would have still have Taxotere (I think).  I was 62 at diagnosis and am hypertensive.  The heart issues with Adriamyacin were sited as why Taxotere was recommended for me.  It made sense at the time.  I volunteer as a peer navigator for newly diagnosed cancer patients now and believe me, Taxotere is still being used often.  Of the 5 women I've worked with so far, 3 have had Taxotere and they all know I don't have hair before they even started their treatments (we're matched usually even before they have surgery).  They have all been bright women who have done their research.   

I think oncologists only focus on the very serious health risks (like death) associated with drugs, but they need to start paying attention to the "cosmetic" ramifications as well because this can (and was for me) be devastating.  I told my oncologst last week that I planned to bitch about my hair for the rest of my life and since she extended it, she needed to be prepared to hear about it for a long time.  Her response was that she didn't blame me, but this shouldn't happen.  Well - it did.  I think "they" need to start accepting that it does.  6% is a lot.