Did anyone had her hair back after taxotere???

Kathy61

Just standing up to be counted as another woman who was left with permanent alopecia as my souvenir of my breast cancer experience.  My treatment was docetaxel (Taxotere) in 2006.  My hair is thin on the sides, and barely there on the top, and my brows and lashes are sparse.  I do believe, from what I am hearing, that most patients do grow their hair again after treatment.  But, I waited eagerly for my hair to regrow, and it did not.  I am sad.       

enjoylife

Its not lower its higher there are allot of laides who dont use the internet or know of these posts and ong. are still in denial

chiefswife

I had to do 4 treatments of Cytoxin/Taxotere and lost every hair on my body, now it's been 17 weeks since finishing chemo and I am growing hair everywhere. The hair on the sides and in the back of my head is nice and thick while the hair on the top of my head is still really sparce. My eyebrows are not as thick as they were once, I do have nice eye lashes. I am washing my hair with Johnson's Baby Shampoo about every 4 days. Right now it's almost 2 inches long and coming in straight and grey. I used to have thick, brown and wavy hair, I am thankful to have whatever I get!!! And I am truly sorry for those of us that have not had their hair return. Cancer just sucks...

jessamine

I had A/C then tax. During A/C i lost allmy hair, but it started regrowing during the tax. which my onc said was common. I had a full course of taxotere- my hair started coming back all fuzzy during, and now 9 months out is totally regrown, head, pubic, pits, legs and lashes. Nice full head hair tho very curly (was always straight) but that's temporary I hear. My hair is perhaps a tiny bit thinner in the front, my eyebrows are a bit thin, but no one but me would notice and I think that is the estrogen deprivation and not the chemo. One thing that did happen is the regrowth of lashes pushed out the few stragglers that had lasted thru chemo, making it seem like i was losing my lashes still post chemo, but the short ones were nice and full and grew in relatively quickly (easy to say now, i know, it didn't seem quick then). I think permanant hair loss is pretty uncommon- I wouldn't worry too much.

cookiegal

If there are other Taxols that are just as effective why do they keep giving Taxotere?

hrf

Jessamine, I don't generally "argue" back when others disagree with me on these boards. But for you to write, "I think permanent hair loss is pretty uncommon - I wouldn't worry too much about it" is offensive and demeaning to those of us who are posting here and telling you that we have suffered permanent hair loss.It's not a possibility for us - it is our reality and that is what we are talking about. I'm happy for you that you got your hair back but I didn't and neither did many of women posting here. It is not trivial and it is not insignificant -- it is life altering and contributes to a lower QOL.

ktym

hrf and Shirley. My heart breaks every time I think of you going through this.  I hate this drug with every fiber of my being.  Scalp okay, rest of the hair not so much.  Eyelashes ae small compared to what you are going through, but, it is a reminder to me every morning how hair doesn't grow back for some.  I thank the two of you for warning me ahead of time. My onc when I questioned it said "never heard of it." my onc now says "thank goodness it hasn't happened to me personally, yet, but it is real."  I felt at least I was warned going into it because you two have been brave enough to keep the message out there.  For me it has been the neuropathy.  When I first complained about it "doesn't happen with this drug,"  then "it should get better."  No one pretends it will anymore.  I live in pain every day and had to give up a large portion of my career.    I don't get why they're still using it either I really don't

LtotheK

There are a few issues at hand.  First of all, whether it's 1% or 10%, the doctors do not warn patients about this side effect.  The reason I think it's important they do is some of the research and folks here indicate that 12 Taxols =4 TC.  I have heard people here say that they 4 TC makes it less work for the clinics.  In any case, women seem to lose less hair on Taxol.  If that's the case, I think women should have these options in steering their own treatment, particularly in cases like mine when frankly, two years of research will show almost definitely that chemo was overkill.

I have full covering,but it took forever. Four months, to be exact.  I consider my eyelashes and brows one of my best features, and they are ruined.  From what I gather, they probably will never be the same.

Hair is NOT equivalent to dying of cancer, and I understand we are trying to save our lives here.  I do, however, object to the general "one size fits all" approach to treatment.  Thank goodness I had a naturopath at my side, I took L-glutamine.  And...I was the only woman in my cohort who didn't get neuropathy. 

ktym

glutamine didn't work for me, neither did several other supplements, sure wish it had

LtotheK

Kmmd, that makes me very sad indeed.  I watch my BC sisters locally who struggle with this SE.  One of them just started neurontin.  As a chronic pain sufferer from another medical issue, my heart truly goes out to you.

ktym

Thanks MHP70, I apprecicate that.  I told DH good thing I didn't know going into it how lousy I would feel afterwards because I probably wouldn't have done any treatment and I'm still hoping I'll look back on this and think it was worth the extra years of life with family.

lago

I had no idea when I started with taxotere that there was a chance of my hair not returning. I have one more chemo to go (have done 5 already). It does concern me that the longer I'm on this that it could increase my chance of my hair not coming back.

I did get some neuropathy but started using the Acetyl-L-carnitine. I only have a little in my left heel. The thing I did get is my nails not only lifted and turned black but the hurt and my thumb became infected. The hurting is a SE of taxotere but not as common. Had I known about this I would have been icing my fingers.

So as you can see the SE are different for everyone. I do think as more women suffer permanent hair loss taxotere will no longer be considered as the first choice drug.

jacksnana

I finished TCH the end of April and by August I felt comfortable going out without my wig.   My hair is totally grown back in now, and I am grateful.  Didn't lose eyebrows and lashes during chemo, but a couple months after chemo was finished they all fell out.  They came back slowly then fell out again!  They are back now and seem to be pretty much the way the were before.  Don't know if this can help anyone, but I used Nioxin shampoo and scalp treatment/conditioner during chemo (recommended by the chemo nurse) and until my hair was totally grown back in and I continue to use the shampoo still, about every other time I shampoo my hair.

I am so sorry so many of you are dealing with this.  Our hair is important to us.  I did find out during my treatment that this was a possibility and I definitely stressed about it, but oncologist and nurses said they'd never heard of it.  I don't know why they don't at least acknowledge the possibility. 

ptjen

KMMD:  Did anyone suggest L-glutamine for your neuropathy? I learned about it on one of these discussion boards during my chemo (t-c) when I started to have symptoms. I asked my oncologist and she oked it and it really did work. I started it about two weeks after my chemo started and took it throughout and for a while after. I don't know if it can help this far out, but I'm convinced it made a difference for me.  Good Luck!

Kindergarten

Yes, I had 4 treatments of taxotere ending in 2005, I now have a full head of very thick hair. It was curly the first year after treatment, but my hair straightened out. I am so sorry to hear that some have had negative side effects with taxotere. Kathy

Kindergarten

Yes, I had 4 treatments of taxotere ending in 2005, I now have a full head of very thick hair. It was curly the first year after treatment, but my hair straightened out. I am so sorry to hear that some have had negative side effects with taxotere. Kathy Prihode

PinkSurvivor

I did 4 treatments of taxotere, carboplatic and herceptin for 1 ear.  I was never told that taking the taxotere could cause permanent hair loss, that is something major that should be discussed with a patient before they decide to use it.

I am about 1 1/2 months out from last chemo and my hair is about an inch off the top of my head, the back and sides are very thin but seem to be growing in, my armpit, pubs, eyebrows are all growing back and my lashes are slowly coming back in.

My heart just breaks for all of my "breast friends" whose hair is permanetly gone, I couldn't even imagine.  It is one thing to be bald when you have cancer and are going thru treatment but to never have it come back and be cancer free just breaks my heart.

God Bless!!

Charley

I did 6 xTC DD and finished May, 2010.  I did not had have any hair (scalp) regrowth for 10 weeks PFC.  My hair is now approximately 1 1/2 inches long but I have a huge bald spot on the top of my head where hair is very thin. I am just hoping I can someday go without my wig and I am not one of the 3-6% that suffers with permanent loss. Also eyelashes are short and thin despite using latisse.  Eyebrows are also thin as is hair everywhere else.  <sigh>

Charley

bdavis

I am slated to start TC 6x on Tuesday and i have been stressing about this all week... I spoke with my onc on Monday about cold caps and alternatives, and he said he has 2 patients out of 1000s who have suffered permanent loss... and in his opinion I have a greater chance of chronic neurapathy with Taxol (my alternative) than with total hair loss with Taxotere.  I have asked myself which is worse, and would love choice #3... but if I can't walk or button a button or do anything due to neurapathy, which is somewhat prevalent with taxol, I am leaning towards tossing the dice with taxotere.  Of course, I may be choosing wrong, and will regret it forever, but I need to make a choice, and I think mobility is far more important to me.   Also - I have high blood pressure, so some other drugs really aren't an option.  Crossing my fingers, and toes!

ktym

bdavis, why does he think the chances of neuropathy are permanent more with Taxol than Taxotere.  Interesting, not what my Onc said, nor what I've read as it became apparent that my taxotere caused neuropathy was permanent.  Switching to taxol weekly instead of taxotere every three weeks is what my onc offered to help with the taxotere symptoms.  I swear I think someitmes I've been told things just to get me out of the room rather than because they really believe them

nikola

There is slightly higher chance of peripheral neuropathy with Taxol because is administered weekly. I was on Taxotere and after each Tx I was having tingling sensation starting 7-10 days after infusion and going away by next Tx. But, there are meds You can get for neuropathy.

lago

I have had a numb left heel from taxotere. It started after my 1st tx. It used to go away by the next treatment but not this time (tx5).

208sandy

I was on Taxotere and was NEVER told of hair loss problems - now I have them - I am two years out from last treatment and BTW I have neuropathy - mostly in my feet and I was NEVER told about that either until I was six months out and I begged for help and then was told it was permanent and please don't talk to me about gabapentin or whatever othe name that drug goes by it did nothing but make me so exhausted I slept for 20 hours - needless to say that one lasted all of a week - the neuropathy is o.k. as long as you exercise and I guess I am glad that I ditched the high heels a number of years ago to prevent my knees and lower back from collapsing because I wouldn't want to be trying to wear them now.

I think I hate that the oncs treat us like a bunch of two year olds who are self obsessed - information is power and we're all able to make the right decisions - interesting how Taxol is now being offered when people question Taxotere and I understand it is just as effective.

Wouldn't it be nice if the company responsible for Taxotere would pick up the costs and own up to the se's of their drug - also would be nice if there was a "black box warning" and if the oncs would tell us the truth regarding the se's.

Sandy

lago

Sandy I was given a 3 ring binder at chemo training that had pages of the possible SE (except permanent hair loss) and what to do or when to notify the onc. It did say rarely does a person experience pain or nail loss but of course I seem to be getting the weird SE. I really hope I don't get the permanent hair loss too but what's done is done. No going back now.

When I first started to get the neuropathy my onc said if it continued to get worse she would lower my dosage. When it didn't get worse she assured me that over time my heel would get better… granted even if it doesn't it's not bad, only a little numb and no pain.

bdavis

NANCY: Thanks for your encourgement. I spent today out of the house and away from my computer so I was not obsessing about the hair thing all day... yeah!And I asked my doctor about the cold caps and he does not want me using them because of scalp mets... I can understand that, so I let it go. I was thinking though with 20 degree weather outside, if I take a cool shower and arrive with wet hair, maybe my scalp will be cool...cooler??? sound crazy, huh?

KMMD: I am not sure WHY the doctor said that Taxol had a higher number of neurapathy cases than Taxotere's permanent hair loss cases, but either its documented or its his experience in his office. Neurapathy is a SE with both drug, but much more prevalent with Taxol... so my onc says... He has told me to take a certain dosage for Decadron on Monday that would be appropriate for either Taxol or Taxotere and I will let him know Tuesday which way I'll go.

poodleluvbug

I had 4 rounds of Taxotere and my hair didn't start growing until I was 10 weeks from my last chemo. I am now almost 4 months and I have about 1/2 inch full coverage. It is brown, thick and straight so far...very much like the hair that I had lost (except for the color). I am happy with it. The front, bangs area, took the longest to come in...I was worried about that for awhile but it is fine now. I was really mad at my Onc for not telling me that I might not get my hair back. I asked her why she didn't put me on Taxel instead...she said that the side effects are much worse (I had no side effects on Taxotere other then the hair loss), and that there is just as much of a chance that you will suffer from permanent hair loss on other chemos...not just Taxotere. Of course, nobody says this to you before you start the chemo. I am still mad...I would have never taken the chance. If I ever need chemo again I will not allow them to use Taxotere on me...I would rather have other side effects. I hate cancer!

suzieq60

Hey poodle - glad to hear you have full coverage now!!!!

Sue

bdavis

What color was your hair before?? And I have the choice and am leaning toward Taxotere cause my onc says Taxol (my other choice) can cause chronic neurapathy.

poodleluvbug

bdavis-my hair was brown...the exact texture and color that is growing in now. I heard that most people get different hair than they had before so I think this is unusual. If I ever had to have chemo again I would only choose Taxol...I'd rather have neurapathy than be bald for the rest of my life. Of course it is just a small percentage of people who don't get their hair back. My Onc said that she didn't give me the Taxol because you have much worse side effects and she always tries to give Taxotere instead. It does seem to me that the ladies that had to have chemo a second time, a few years later, have more problems with regrowing their hair. Not sure if this is true or not...just something I noticed. Hang in there bdavis!

bdavis

Thanks Poodleluvbug... will let u know what i decide.