TC and permanent follicle damage

Internutz, I did 4 cycles of TC earlier this year. My hair fell out towards the end of the first cycle. My chemo ended on May 7, my head was totally bald, and then I started agonizing about whether it would ever grow again or not. It was 8 long weeks before some fluff appeared on my head around the first week of July. The hair took off growing like you wouldn't believe, and I am not wearing scarves, hats etc. anymore except for a sunhat. Now and then I put on the wig, but it is so hot that I cannot keep it on for long, so I go topless most of the time now.

There you have my experience. I only found out that with Taxotere my hair might not grow back at all after it had already fallen out; my oncologist did not say a word about it. Taxotere is a bit like Russian roulette. It is an excellent drug, but there is a 3 - 6% chance your hair won't grow again. It is a small chance, and I am actually glad that I was not faced with that decision. Don't know what I would have done; however, I believe that oncologists should inform patients of this possibility so that they can make their own decision.

Hi, internutz1. I'm sorry that you're faced with this.

Tomorrow is my one year anniversary of my final chemo. I had Taxotere and Cytoxan x 4. My MO never told me about the risk of permanent hair loss; I found out about it on my own after I was well into my treatments. I was never completely bald, but almost. I started to get a little bit of growth after my third chemo and I always had to shave my legs at least once in the 3 weeks that separated each infusion. That gave me hope that perhaps I wouldn't be one of those who gets permanent hair loss. About four weeks after my final chemo, I started to get fluff all over my head like a baby chick. My hair is now about 6 inches long and curly as can be. My arm hair has returned to normal, but it took awhile. The hair on my legs grows fast and is a different texture than it was before chemo. My eyebrows and eyelashes thinned considerably during treatment. My eyelashes are about 75% of what they used to be, but my eyebrows are still the sluggish part. They're definitely growing because I have to tweeze the strays; however, the lack of fullness is very noticeable. I have to use a pencil to make them appear thicker. I had very healthy eyebrows before chemo, so I'm hoping they will return to their pre-chemo look one day. I've also heard the statistic of 6% of those treated with Taxotere will experience permanent hair loss. I definitely think that MO's should discuss this possibility with women before treatment. There are a couple of other threads on here that talk about Taxotere and permanent hair loss so you might want to read through those as well.

Good luck!

I'm also inclined to believe that the real statistic is probably higher than 6%, but I realize that the ones who experience a problem are likely to be more vocal than the ones who didn't. While 6% may not sound like a very big risk to some, those of us diagnosed (especially if there are other unlucky components to our diagnosis) have already drawn a short straw and are much more attuned to not being one of the lucky ones.

I know the 24 weeks is daunting, but you may want to talk to your MO about the Taxol. I don't know much about it with regards to the risk for permanent hair loss, but have heard that it's less likely to cause that.

Best of luck!

@internutz, there's an entire thread about taxotere and permanent hair loss in the chemotherapy forum. I found information that the manufacturer provided to the Canadian health care system--about 3% of the participants in the clinical trial had persistent hair loss. There's a link to that info in the other thread. My oncologist originally suggested TCx4, but when I found out about the possibility of ending up bald I asked him what my other options were. I'm doing CMF for 6 months instead of TC.

Just want to chime in here as I had AC&T - got really bad neuropathy after my first taxol, so onc switched me to Taxotere, which is easier on the neuropathy (and it was).  However, I never did find out about the permanent hair loss that Taxotere could result in, my onc didn't know it either.  This was all 3 yrs. ago, and apparently it was well hidden on the drug manufacturers onsite page, but not relayed to the oncs.  While I do have hair, it is much finer and sparser than when I started out.  My avatar shows it and I suppose to most it looks ok, but I definitely see the difference.  When I wash it and comb it you can literally see my scalp in many areas until it dries.  It is also much harder to style as I have to make sure the thinner areas are well covered.  Eyebrows never came back as full nor did eyelashes.  I still have absolutely no hair anywhere else on my body.  I definitely attribute all of this to Taxotere.  Being TN, my onc wanted me to go as aggressive as possible as it would be my only chance.  I am glad that I did, and would probably do it all over again, but it does come with its downside as well.  That being said, I also want to add that I am most grateful to still be here 3 1/2 years later, thinner hair or not.  Wishing all of the best always,

Linda

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