Permanent hair loss from Taxol?

Sneakychiquita

I'm scheduled to do 4 cycles of Taxol following 4 cycles of AC every other week.  When I asked my MO about potential of permanent hair loss from this cocktail she suggested that this side effect has mostly been restricted to those who were treated with Taxotere and that she personally has not heard of permanent hair loss from the chemo drugs at the doses she wants to put me on.

Has anyone heard differently?  Ice caps would be incredibly difficult for me (financially and logistically), but if there's the chance of permanent hair loss with dose dense AC-Taxol then I think I'll research it more.  I personally can't find evidence of permanent hair loss from this regime when I search online with Google.  I've also posted this question in the cold cap thread.

Thanks in advance.

jancie

I have never heard of anyone suffering permanent hair loss from Taxol.

However, there is a thread here about permanent hair loss with Taxotere - If I remember correctly the percentage is around 6%.

curveball

I googled taxol + "permanent hair loss" and found this brochure, which I think is from the National Health Service in the UK. It says taxol causes permanent hair loss in "a very small number" of cases. The information I found about taxotere when I was researching it, is that it causes permanent hair loss about 3% of the time. That was from information provided by the manufacturer to the Canadian health care system, and I put a link to it in one of the threads about Taxotere and permanent hair loss. (Sorry, I've forgotten exactly which one.) I have also seen the 6% figure for permanent baldness caused by taxotere, but don't know the source of it.

I had a somewhat smaller tumor than yours (just under 2 cm), but a 1 mm micromet in one sentinel node, which I think makes my stage borderline Ia/IIb. My onc originally advised TCx4, but I didn't like that 3% chance of ending up permanently bald, and asked what other choices I had (we both agreed that chemo was advisable, due to my Oncotype score at the top end of the "gray area".) Dr F said AC would be overly aggressive for me, so I took the third choice and I'm now just over halfway through six months of CMF. Has your onc told you why s/he is advising such an aggressive chemo regimen with your diagnosis, which is quite similar? If your avatar is a picture of you, I would guess I'm quite a bit older than you are. Or do you have a very high Oncotype score? Either or both of those factors might be influencing the recommendations.

Sneakychiquita

Thanks ladies.

Curveball - I found that pamphlet as well and thought because it stated there have been some cases of permanent hair loss that I would find something else on the internet to back this up, or to clarify what kind of dosing prototocol it is that brought about this side effect, but no such luck.  I could have sworn my MO said the Taxol would also be given every 2nd week, like it is with the AC, but it appears as though every week or every 3rd week is more common.  I'll clarify this with my MO and ask about the pluses and minuses associated with each schedule to see if one is more prone to hair loss than the other.  I really don't want to sound petty or vain, but the idea of permanent hair loss sounds so devastating to me so I want to minimize this risk if I can without jeopardizing the efficacy of the drug.

As for why the aggressive chemo... well it's all so new to me that I didn't even realize that it was aggressive.  I went into that appt with my MO expecting her to tell me that I'm in a gray zone and that we'd apply to have an Oncotype score to decide if chemo would be advisable or not, for exactly the same reason why you questioned the choice in chemo.  But what I've learned is that the signature doesn't tell the whole story.  Individual pieces of the puzzle on their own weren't overly concerning to her, but when she put them altogether she really thinks it's best to have chemo.  And this MO is the one that other physicians I work with have suggested is the best, so I've got a fair bit of trust in her.

Here's the situation:

1) Age of 39 - Not really young, but I'd like to go for 20+ years without a recurrence.  

2) Multifocal and size - Biggest tumour was 3.5 cm, smaller one was 1.5 cm

3) Heterogenous - Not only did I have 2 tumours with their own unique personalities, but the pathologist took the time to make mention of how certain areas of each tumour displayed heightened mitotic activity.  So while overall he scored them both as being Grade 2, there were portions that were more aggressive than this.  This was the first I'd heard of intra-tumour heterogeneity. Once I read more about it I quickly realized why finding a cure is so damn hard... it's like you have to find a cure for many types of cancer for a given individual because the damn thing keeps evolving into a different beast as it grows.  

4) Oncotype not known - Because of the heterogeneity mentioned above, there'd be no guarantee that the sample that was sent off for analysis was the more active part of the tumour.  One paper mentioned how with folks like me that they'd really need to send off a lot of samples to get a clear idea of the overall genomic make-up of the cancer.  That's not going to happen so I'd have little faith in the score if I were to get it done.

5) Angiolymphatic invasion - This was found with both tumours.  As my MO puts it, "we may not have found them at the dock, but we know the boats were in the water and there's no guarantee that they didn't go to a different dock or went further upstream." 

6) Family history - Okay, my MO didn't mention this but I think of it a fair bit.  My grandma had a BMX with hormone therapy, but not chemo and she died about 10 years after her diagnosis.  She was in her 60s when diagnosed so they're different scenarios, but it still makes me think I should be a bit aggressive with this.  Ditto with a great aunt who died of BC in her early 50s.  

I probably didn't have to tell you all of this, but it actually helped me put it all down to remind myself why I'm going with chemo.  Trust me, the potential for neuropathy, heart damage, leukemia, and permananet hair loss have made me question if I should go ahead with it.  But I'm a single mom to a 6 yr old girl and I really want to make sure I'm around for another 20 years for her.  This said, I will definitely ask about CMF and the other options at my next MO app't.

curveball

@sneakychiquita, IMO, #'s 1-6 totally explain the difference in our oncs' recommendations. I am nearly twenty years older than you are (going on 57). I had one tumor rather than two with a mixture of different cell types, and though there was a micromet one of my sentinel nodes, I had no LVI. Also, though I am the third out of my four siblings to have gotten cancer, I'm the only one who has cancer of the breast, and there is no family history of it at all that I know of. My dad's mother died very young of TB, so there's no telling what she might have contributed to the genetic mix, but AFAIK I am the only one of my entire family ever to get bc, and I think my risk factors (no kids, late menopause, dense breasts, overweight for part of my life, use of hormonal birth control) are easily enough to explain it without bringing in heredity.

I also thought I would be unable to deal with permanent baldness, should it occur. At any rate I was unwilling to incur that risk in return for the minimal difference in outcomes compared to TC (CMF is two percentage points lower in overall survival at ten years, when combined with hormonal therapy). Although I didn't run any statistics on AC since it was not recommended for me, I would guess that CMF is also less effective than the regimen your onc is suggesting, and I would be surprised if the difference between the two is as small for your diagnosis as it is for mine. If that's the case, in your shoes I might have decided the superior outcome justified the risk of permanent baldness.

Best wishes for a successful treatment with minimal side effects---and especially that your hair loss will only be temporary!

sheila888

I received 4 DD Taxol every 2 weeks.....

AC 4 DD every 2 weeks.......

No problems here...

Taxol was much better than AC......not many SE.....

Good Luck

♥

crazyride43

I also had DD A/C and then DD Taxol.  It wasn't easy, but six months after my final Taxol treatment I am feeling strong and have a thick head of hair.  I'm 44, and I know my age at diagnosis (the only place I'm still considered young - LOL!) was one of the big reasons my MO prescribed this aggressive chemo.

Sneakychiquita

Thanks for the feedback ladies.  Okay, so my MO probably did say 4 AC followed by 4 Taxol, every 2 weeks.  And from the lack of replies to my Taxol query (on other threads as well), it sounds as though permanent hair loss from Taxol doesn't really happen.  Hope not, but still going to ask for my MO to explain the different treatments a little more.   

crazyride - Totally hear ya on our age still being considered young.  I went to a fertility clinic today as my MO wanted me to discuss the possibility of freezing eggs before chemo and the doc there mentioned how I was just at the cut-off age and most of his patients aren't as old as me.  At least I feel young when I'm with my MO!   

Jennt28

My hair actually dtarted growing back when I was doing weekly Taxol. While Taxotere can cause permanent hairloss, catalogued by clinical trials, I could find no evidence for Taxol causing it.



The risk of permanent hair-loss was why I asked for my tx to be swapped from the onc's plan of Taxotere to Taxol - and she was amenable to that as she said both were equally effective.



Jenn

Sneakychiquita

I'm feeling more and more at ease with starting chemo.  Thanks, Jenn!

Snax

Jenn, a question: I'm just beginning to consider asking for this same switcheroo. (Though I can already picture my dismissive oncologist shutting me down with a superior sneer.) Does choosing Taxol over Taxotere extend your chemotherapy time?

Jennt28

Taxol is commonly given weekly for 12 weeks while Taxotere is commonly given every 3 weeks for 4 cycles. This does mean that technically the Taxol goes for longer...



Jenn

Sneakychiquita

Snax - I'm doing dose-dense AC-Taxol. My Taxol schedule is once every 2 weeks, for 4 cycles (i.e., 8 weeks total).  You have every right to explore your options.  

Snax

Thanks Jenn. I'll bring it up when I see my onc before FEC tx 2.

Snax

That's interesting Sneaky, that you're doing AC/Taxol. I was starting to believe that the protocol in Canada is FEC D (or T, for Taxotere). I wonder what the thinking is behind the different treatments. Heaven knows I've learned a lot in the past few months (diagnosed in late Aug.) but I've just scratched the surface!

Sneakychiquita

Each province has their own guidelines.  I'm not sure if it's the difference in location or the difference in our demographics and pathology that makes the difference in our treatment.  My MO said I was getting one of the more aggressive treatments.  

Susieq1

I took Taxol as part of my regimen and I did suffer permanent hair loss. My hair is patchy with bald areas and where there is hair it is wispy and brittle and dull. I look like the mad scientist in back to the future! I have to wear a wig. It is humiliating. Has anyone else had this experience

juviben

Yep!!! I did. I had great hair before the chemo. Now it's very thin on top and nowhere near what it was before. I had chemo almost 5 years ago and I still can't grow out my hair because of how thin and fine it is on top. Makes me sad.

Bra32TNBC2013

yes, my hair was baby fine before, but I could make it look ok w extensions... However, I had chemo in 2013 for TNBC, had AC Avery 2 weeks for 8 weeks and Neulalsta, then 11 weeks of Taxol. My hair is now more fine (thin) and weak, broken split ends...... My pony tail is tiny like a rats tail. Tried NIOXIN 4 shampoo for hair loss, made it worse and so dry. My self esteem w/o my wig is down the tubes.... I look awesome in my wig, however not so without it, look 30 yrs older, like my own grandmother. What have you done to help yourself/your hair????

Kathy29

I had 8 weeks of chemo, 4 treatments of Adriamycin and Cytoxin and then 4 weeks of Taxol. I have had some permanent hair loss with these drugs, mainly my hairline receded at least 1", maybe more, and the hair won't grow back. I've take Biotin and Biosil to help my hair grow, I've used the female treatment of minoxidil and nothing works. I also lost my eyebrows and they only grew in partially and what did grow in was course unruly hair. I'm going to have micro blading done to replace the eyebrow loss and will see a hair specialist about my hairline. It's already 3 years since my chemo treatment ended and no sign that this hair is coming back. My (male) oncologist never mentioned permanent hair loss to me and didn't even want to discuss side effects really and I had a number of serious side effects.

Moderators

Dear Kathy,

Welcome to the community. We are sorry to hear about your hair loss but we are grateful that you reached out here to share your story. Please keep us posted and let us know how things go for you. The Mods

chantalbe

I fear that I have permanent hair loss from Taxol. The only hair left on my head was the hair that was buzzed off when I got my wig. Those hairs have seemed to get longer. But the rest of my scalp hasn't changed; I can't notice any new growth.

It's been a month since I ended chemo. Maybe I'm not being patient enough? I am very depressed and I don't know how I can go on without my hair.

Should I try biotin or nioxin shampoo?

wintersocks

Thinning hair on top, hair much less thick than pre-chemo,

depressing.

muska

Hi sneakychiquita, after AC+T (12 weekly taxol infusions) my hair is as good as before chemo if not better. Hair started slowly growing back while I was on taxol but it took a while to grow, especially at the top of the scalp. On a picture taken a year after I started chemo, the hair is still too short to go without a wig, so you need to be patient.

Good luck with your treatment!

Tressy

ive been looking for info on permanent hair loss post chemo for drugs other than taxotere...its been over 3 year s since I ended my ACT regime, and my hair grew vack (chemo curls at first) but it has never returned to it's pre chemo thickness and it hardly grows at all. My stylist used to hate doing my hair bc it took so long since it was super thick...now she doesn't mind. Plus in the past year or so I have noticed it is really starting to thin even more- ive always had bangs but now they dont look or feel the same, and I can see my scalp in a way I never could before. I had my thyroid checked but it was on normal range. Maybe im just getting old- ill be 36 next month...im worried its going to continue to thin. Many of my friends who are older and went through chemo 10+ yrs ago have very thin hair.i take a biotin supplement, have been using castor oil, using organic shampoo etc...any ideas or similar situations? I know this isnt the worst thing to happen due to chemo...but frusterating. Thanks#

tetonfun

My second regimen of Denice dose chemo was taxol and herceptin. I never got back hair on my legs, armpits. My eyebrows have very little hair so I had them tatooed. My eyelashes are scraggly and my head hair is sparse. This chemo occurred in 2006