continued hair loss

[katieb]

Hi ladies - one thing that worked for me and still is - hair extensions just at the front so I had a full fringe. My hair at the front of my head came back very short & curly and the crown is very fine & sparse and rest of it is very soft. My hair dresser put about a dozen extensions at the front and it looked fine. Nobody knew I'd had the extension - you can't see them. Might be worth a try.

[nannabarb]

I agree Topsymo, I wonder if there's anyway we can make our voices heard outside of this forum, as you say, there seem to be a lot more of us than they are admitting to..
Maybe THE MODERATORS have some suggestions...

[topsymo]

This is a really interesting thread: I repeat my previously stated opinion that this hair problem is very under- reported and is much more common than the oncologists are prepared to admit.
My own onc told me it was "very rare" when I know for a fact that he' himself has seen at least 2 other people in the last year or so, with a worse problem than me- who I know about through these forums!
I am sure that Taxotere is the main culprit - and that the aromatose inhibitors exacerbate the problem, rather than cause it.
It is dificult to say what would have been my reaction if I had been told before chemo that my hair might not re-grow. I don't think any of us would have refused treatment because of it; at that stage I guess it wouldn't have seemed such a major problem - we had other things to concern us that were more pressing; but now............I just wished I had been warned & encouraged to try the cold cap. We were warned about so many other side effects - but were always told that our hair loss would only be temprorary!

[Charbs]

Hi nannabarb,
yes I am on tamoxifen but only started taking it about a month ago. I will have to keep my fingers crossed. I agree that it is good to see the ' head honcho' every now and then, you do get decent answers to your questions and that builds up your confidence in the treatment being given.
Have you had really cold feet and hands too? Mine go numb at night they get so cold, and I had hoped that it would have go away by now.

[nannabarb]

Charbs, are you taking Anastrozole (Arimidex) or Tamoxifen, as if you are, that might be the cause of your hair loss.
I had my appointment with the ONC last week, mixed feelings about his response. I actually saw the top man at my hospital for once (first time since I finished chemo, other two appts have been with registrars. No offence, but they are jsut not as knowledgeable. They have been saying - oh dont worry, its fine, it will come back).
Head Honcho, when I took of my hat said "Oh, thats no good at all is it?" and went on to say that in 30 years as an oncologist he has never seen such a bad case of the hair not returning. Apparently Im one in a 1000 or there abouts... He thinks the Anastrozole is the cause, and has now put me on Tamoxifen... still thinks it will be 3 - 6 months before I see much difference.. so I live in hope of at least having a decent crew cut by the summer... watch this space.

[Charbs]

I too had the dreaded docataxol for 3 cycles last year and FEC for 3 cycles, finishing in October. I used the cold cap for all 6 cycles and was pleased with the results at the time.I had my long hair cut short and washed it gently with baby shampoo throughout, using no styling products or heat treatments. It did thin out, but luckily was very thick to start with so the results were pleasing. My ONC said that the success depends on the cap fitting really tightly and being left on for the recommended amount of time, which is different for each drug.
Unforunately since I finished chemo my hair has continued to fall out at a steady pace. I thought it was due to stress as I had to have a major op in Dec, a bilateral mastectomy and recon. I can see from reading these posts that the hair loss may be due to the chemo after all. It is a shame as I am hoping to get back to a sort of normal life but cannot feel back to my old self without much hair!

[nannabarb]

Thanks Topsymo,
I think you are probably right, at the mo, mine is 'long' (about 2 inches lol) and straggly, just waiting to show ONC next week then am going to give it a no. 3 all over, like you say, I dont think it actually makes it grow any thicker, but it is neater.

[topsymo]

No - I don't think it's worth a try!
If your hair is anything like mine, there are areas, especially at the front on the crown where the hair is very sparse; if this product works at all, I think it will only accelerate growth where there is already hair- and my/our problem is actually that only a percentsage of our hair has re-grown.
If it's any encouragement, I do think my hair has thickened a little over the last 2 years (I'm now 4 years post chemo but still on the dreaded Arimidex) so I don't think we should give up. Regular cutting does help - short , thin hair is definitely a better look than long and fine.

[nannabarb]

Saw this article in the Daily Mail today... what does anyone think? Worth a try? after all I've saved LOADS of money on regular shampoo/conditioner/hair do's over the last 20 months..
http://www.dailymail.co.uk/news/article-2257448/Wash-amp-Grow-Shampoo-trigger-hair-growth-twice-norm...

Somebody called Very Very Grumpy commented on DM website that it is Snake Oil... could that be our very own dear Grumpy???

[January]

Hi all
I was interested to read the comments from those of you who like me are struggling with the regrowth of hair. Nineteen months after my chemo finished I still have hardly any and what I have is very fine and flyaway. For me going out without a wig is not an option. My ONC has tried to persuade me that the problem is caused by the Tamoxifen but I am not convinced and feel the Taxotere is to blame. I am told I have been very unlucky and this rarely happens. However it seems to me there are a good few women out there with the same problem and probably a good few more who are not making their problem known. I would like to encourage all ladies with this problem to make themselves known to the Medical profession. I do not think either the ONC or the BC nurses appreciated just how depressing the lack of hair regrowth can be. It may encourage ONC to at least tell future patients this may happen. That would give them the opportunity to seriously consider the cold cap and to enquire if there is any other equally effective drug that could be used which does not carry the risk of this side effect.
Meanwhile I would be happy to hear from any one struggling with this problem and particularly from anyone who has found with time their hair does start to behave normally.
Best Wishes to you all.

[woodlandmanor]

Hello I am sorry its taken so looh to get back on this thread, not really sure what happened but just wanted to update all your thinning hair ladies! Six months on my hair is still as thin but I have taken the plunge and had a mesh weave woven into my thin hair on top and hair sewn on to the mesh to create lovely natural, long locks. It uses real hair and you wash and style it just as you would your own and no one would know it wasn't all natural unless you told them. You can touch your head and feel the ridges where its stitched but you can't see them. I am thrilled with it and it doesn't pull on or damage what hair you have. It means I have at last ditched the wig and I can't tell you the joy of not having to take my hair off at night. I had it done by a lovely lady called Jennifer who was lots cheaper than the main centres you find on the internet. I don't know if I am allowed to give you her details but if anyone would like them do contact me on my email which is chlobows@hotmail.com. It was £750 so not cheap but its made such a difference to me I wanted to share it with you all.

Lots of love to you all T xx

[happy_cat]

Hi all
i finished chemo in october 2005, and my hair is still very thin and is only 1 inch in lengh. i resorted to shaving it all off last summer and is a bit thicker than it was but i still wear a wig. my OH hates it as I use to have lovely long hair before

[Foxy]

I haven't had chemo, but my hair began to thin and then I lost a whole patch at the front after 6 months on letrozole and I blamed it on that. My onc suggested ruling other things out and I had tests for low thyroid and coeliac disease, both of which can cause hair loss. My GP then referred me to a dermatologist who has done a biopsy. I get the results next week but he is pretty sure it's something called frontal fibrosing alopecia which affects post menopausal women. It can't be reversed but it can be halted with steroid treatment so it is probably worth seeing if you can get a proper diagnosis in case it is something which can be treated. For reasons I won't bore you with I actually saw the dermatologist privately which cost £150 for an hour's consultation, but he has now put me on his NHS list. I think this compares well with some private hair loss clinics.
Good luck everyone
Foxy
xxxxxx

[supertrouper]

I had 8 chemotherapy cycles last year, 4 x EC, used the cold cap once but lost my hair after the first cycle, then 4 x TAX. I lost every single hair on my body. I read an article about using emu oil to stimulate the hair folicles on my head (I wasn't fussed about the hairs anywhere else) so I bought some. Every night I rubbed the emu oil into my bald head - it got rid of dry skin which was a bonus) I finished my chemotherapy at the end of November, by which time a bit of white fluff had started to appear on my head. I shaved all the fluff off on January 1st 2012. I now have what is considered to be a good covering of hair, thinner on the crown than I would like but nothing that would be noticed.
I take Letrazole daily - my hair is a totally different colour that it used to be and baby soft. Have any of you tried just shaving everything off and starting again? What's to loose if you are still wearing wigs? And - as I am a "glass half full" type of person, try to see the positive side of this. I save a fortune in hair products whilst wearing wigs, not to mention the time getting ready to go out! No such thing as a bad hair day. I was always good to go in about 10 minutes compared to the 60+ minutes that it takes now to try and stick down the tuffty bits!
And...I am still here to tell the tale.
Keep strong ladies xx

[Tigerlilly]

I too am experiencing permanent hair loss after Taxotere, I recently found an American website which states there is a small possibility that Tax can cause permanent hair loss but that it is not often advertised. I wish I was given all the facts before chemo so that I could of made a more informed decision and I may have tried the cold cap if I had known this was a possibility. I get very down about it as all I can foresee is a lifetime of wearing wigs. I just get shrugs from the breast care nurse and oncologist!
Surely we should be given all the information prior to treatment!

[janipi]

I have been feeling really down about my lack of hair. I finished chemo FEC and Docataxel in May 2011. I was looking forward to having hair again but regrowth was very slow. I too have the male pattern baldness and at 51 this is not a good look. I am on tamoxifen and will be due to change to letrazole. I have read that letrazole causes hairloss. Not keen on wigs. I am coming to terms with my new look but it has been hard. I had a darker dye put in as my hairdresser says that the fine white hair gives the appearance of baldness from a distance.. My onc said she was sorry but it rarely happens. I read some french research and it is suggesting that the taxanes drug now used is causing permanent hairloss in some cases. If this is true I am hoping that BC patients will be told that this could happen. I think if I had known this I would have persevered with the cold cap. I would be very intererested in what the trichologist says. I am wondering how many of us using this site have suffered permanent hairloss from TAX.

[woodlandmanor]

Thank you for all your replies, I have almost resigned myself to a life of wigs which is a whole lot better than no life!! I think its underreported too, my doc said it was very rare!! Not sure he takes a lot of notice of hair stuff although he is fab at everything else. I looked into the mesh and decided to go and try a caribbean hair weave lady to see what she says as that technique weaves into each hair you do have and friends who have this technique done say it works as they are very sparse underneath. I don't want to wreck what I have left but if its under a wig what does it matter. I would be very interested to know what the trichologist says.I am 51 and yes had tax and now letrozole which I think makes it worse. Not sure I could dye it as worried it would make my scalp show through more, what colour did you go?
all the best and love to you all Tessa x

[c1are_uk]

Hi, I can't comment too much on this but my mum has just started docetaxel (taxotere) chemo and has started the hair loss process. How you describe your hair is how my mums was so will be interesting to see what happens to mums. I have read it can leave you with permanent loss on that chemo and like you say it's probably un reported exactly what happens so onc don't really know. My mum didn't lose her hair last time round, she had cold cap and her hair just thinned. I can't begin to imagine how you feel as the hair on your head is a very femanine thing but I'm sure you do look fab, as your family tell you.
Best wishes
Clare x

[topsymo]

Hello- another one in the same boat I'm afraid- and I don't think I can be very encouraging to you.You don't say how old you are - I do think that this is a factor. I was 65 at diagnosis: 69 now.
I finished chemo in Dec 2008 and have had very slow hair regrowth - and I think what I have now is as good as it's going to get.
My hair used to be thick and wavy; now I think I have lost half the follicles and the hair that has grown is fine as well as thin (the top of my head burnt when I was in the sun last week) It is like 'male pattern baldness' sparse on top etc .
I have looked into various hair restorers but do not believe that any of them will do any good for those of us who have lost our hair through chemotherapy ( Taxotere in my case) coupled with ongoing hormone treatment (Arimidex) & the age thing. My onc expresses surprise at my problem & says it's VERY unusual but I think that that is codswallop: I think it is actually just under-reported- particularly as many of the sufferers are amongst we 'more mature' women.
I wore wigs for 3 years but my family prevailed on me to come to terms with my 'new look'- and I am trying to be reconciled to it! I now have my hair cut every 8 weeks ago to prevent it getting straggly and I have great faith in my hairdresser- she has really made the best of what little hair I have- and it's mostly white - which helps I think. On a good day I kid myself that it looks like Judy Dench's hair - but usually I am too conscious of the "gaps ' when I catch sight of myself in a mirror........too depressing!

[winnie2]

Hi Lazycat -
I would be very interested to hear how you get on with the Trichologist.
I fear there may be a time when I have to consider a hair transplant !

[lazycat]

Another one here who is still wearing a wig a year on .. I have thick hair at the sides and at the back, but the top of my head is really really really sparse! Very similar to Winnie2's male pattern baldness problem I'm afraid, and yes I had the infamous Tax. Hairdresser cannot do anthing about, apart from trimming what I have and give some lotions, , hence after waiting for a miracle for 15 months I have decided to see a trichologist. I have an appointment this coming Friday. If anyone wants to know what he tells me please le me know! More than happy to share my experience with you. Jeez, I only hope he tells me it's reversable !!!

/

[winnie2]

Hi - I finished FEC /Taxol end of May 2010. My hair was extremely slow in regrowing and I was still wearing my wig in February 2011..
I do now have a fulll head of hair, but I have thinning of hair regrowth that mirrors male pattern baldness - thin on top and a regressed hair line.
I signed up to one of the American Cancer support websites and discovered a thread of women all with the same problem - which seems to be Taxol related. This doesnt solve the problem but it does make me feel a little better.
I cope by having an organic hair dye every 6-8 weeks ( the hair loss is far more noticeable in my natural grey) and use "spray on concrete" after blow drying.
I talked to my hairdresser about having a mat of hair woven in - I was put off by the fact that this process does pull on the natural hair and may lead to accelerated thinning of what is left. For the moment I`m sticking with dye and spray on concrete.
Hope this helps a bit.

[woodlandmanor]

Hi I had a mastectomy in May 2010 and am a big cup (HH) I haven't had a reduction or reconstruction yet although a reduction is planned. I am not sure why I just haven't felt it was the right time to have it done. I had a left side mastectomy and for the past few months have had a aching pain in my left side around the bottom of my ribs. I have told the breast care nurse and the consultant who said as it was mild and not continuous, It wasn;t something to be worried about, but it isn't going away. I use a heavy prosthesis and know I am still lop sided and am wondering if any of you have this experience and if you think this may be the cause of the ache. Also any one with thoughts on the breast reduction? Thank you xxx

[woodlandmanor]

Hi everyone, I am hoping for some advice and info however brutal that may be!! I finished my chemo in November 2010 and lost all my hair, some has come back but its very thin and I have some particularly thin areas each side of my head. I abandoned the wigs for a few months but it didn't improve, I am on letrazole and wondering if that isn't helping. I have resorted back to the wigs! Wondering if this is other's experience and if so whether any of you have tried alternatives such as a weave? Just looking for ideas really. My love and best wishes to all of you out there fighting the good fight! xx