Glad it was useful Carolyn. And glad you're doing your own thing re hair -grey is the new black!! 🙂 There are loads of youngsters trying to make their hair grey & there's us trying to hide it -well some of us!!! So flaunt your hair for all its worth Carolyn -you are officially Trendy!! 😀😀😀 Yay!!!
Hey all thanks for the lovely support -sending you all virtual hugs!
Everyone in the real worldthinks it's fine cos I wear a wig which does help ....so it's lovely to be able to talk so openly!!
And a very belated warm welcome to Mush!! Sorry I was so slow.
Hair dyes -Ever thought about using Daniel Fields dyes? They are recommended by cancer hair.co.uk -ones you can use during chemo so reckon they're safe don't cause damage. They come in a powder & you mix to the strength you want with water -washin/out, semi, Demi or permenant. You can mix the powders together to make your own colour. Cost is not much different to a supermarket bought one. You buy them online -make sure it's the correct site -it says this is the real Daniel Fields website. Long story as to why you need to check for that!! Xx
Believe me I totally undrstand where you are coming from. One's hair is what defines us and makes us feel somewhat normal and without that we feel like we have become poster children for Cancer. If you know what I mean.
Thanks for the info. Spoke to my Oncologist who says it's due to the Doctaxel chemotherapy -apparently it can do that to your hair but I didn't know that. My hair has never come back properly since chemo, thought it was just being very slow -I have classic hair loss that can occur with this treatment Ocologist says. The Letrozole is making it worse. Dare not change brands -the one I'm on has the least side effects of the ones I've tried so GP put it on my script.
Am gutted to be honest....not keen on mirrors anymore! Lol...no that sounds rather vain after all we've been through but somehow it's a bigger deal then loosing my breast!!
Very interesting. I will have to look into this more when I get home as i am work right now and am limited to how many times I can look at this.
Thank you for thew welcome. It is refreshing to have someone welcome me to a sight. I hope this site will help me in some ways. I am very angry about this diagnosis, already having had Leukemia at 44 and kicking it;s ass. breast cancer stage 1 lumpectomy and radiation and of cause tamoxifen for 5 years. being cancer free only to have had this happen a year after i was off the tamoxifen. Now I have something that there is no cure for and everything is so dibilitating to me. THis is interferring in my life way too much, that i just can't handle it.
No I am not on any clinical trial and the Ibrance was released in the United States in February of 2015.
I will see if i can find the brand of Letrozole I have. I thought they were all the same. I also didn't realize that this site is in the UK.
I appreciate your response but the only thing is that I have noticed that the hairloss had sped up rather than slow down. Will this keep happening? And, yes i would like to get rid of the ugly grays, but I am so afraid.
I probably will try and use the dye for a shorter time than they recommend. Yes, it does seems to condition my hair nicely for a while but at this point I have no idea if that will happen. I have so much less hair at this point than I did months ago.
Throwing this out there.................. I am on Letrozole, Have Stage 4 Metastic breast cancer and also am on Ibrance. Right now i am off chemo so my body primarily my tongue can heal from the effects of the ibrance.
My question is...................My hair has thinned out a lot and is still coming out. I wouls imagine that by next year it will be extremely thin, sraggerly or even almost gone and I am extremely upset about this as I never asked for this horrible disease in the first place.
Okay, enough venting........ my question is does anyone know if using a semi permanent hair dye will harm my hair at this point? I have used this in the past and had no problems but the last time I colored it, when I washed it i would say much more than a few strands came out. Help please? My grays are beginning to show and I need to do something. I'm not that old yet and do not want to look like and "old lady".
i just want to put the record straight re my hairloss so to avoid any panic. I have spoken to my Oncologist and he feels the hair loss has been caused by the chemotherapy drug Docetaxel (taxiotere) as Letrozole at worst can cause some hair thinning. It maybe the Letrozole has exacerbated it but is not the cause. So rest easy those on Letrozole and if you are like me with a 40% reduction in reoccurrence it's not a drug to miss if you need it!!
So sorry Bennie did not mean to panic you. I am unusual as Carolyn quite rightly stated its the minority. My Oncologist yesterday said it is rare. So there we go. I know several eloped on Letrozole and their hair is completely ok -no signs of hair loss. Mine has been compounded by all the harsh treatment they had to use and I was lucky cos it worked!
Pso rest easy Bennie 🙂 xx
Thanks for that reply - yes, you're totally right regarding the statistics. One day, I hope they will be able to devise drugs which can combat our illness with reduced side effects.
This is all really scary! I am in a good place at the minute, as I am 6 weeks post-surgery and ready to start Radiotherapy. It is lovely to see the hair grow on my head, brows and lashes, but I have now started on Letrozole and I am reading all your posts. This is really awful as we have all been through so much in terms of losing hair to chemotherapy and feeling ill through treatment. Now I have the possibility of getting all my hair back to losing it again?! My heart goes out to you all and let's hope that there is some more research into the link between Letrozole and hair loss. I had boxed up my 2 wigs (which I got on the NHS) thinking I wouldn't need them again. Can I ask when you noticed your hair loss beginning while on this drug? And I wonder if it happens to everyone?
I am waiting to hear back from my oncologist -think he tried to contact me on Friday but I was on a course so phone switched off.
Pre alternative medication my breast care nurse told me there are two others -however have looked them up and they all have hair loss as a side effect. As for barns am on Sandez -I tried two other brands before finding this one -the other two caused allergic reactions and I ended up in hospital! Clearly my body is super sensitive!! I can't come off it all together as Tumour was highly estrogen driven. I think this problem will grow as they get patients to take it for lager and longer. I have another four years to go!
Flint really appreciate your explanations. Am not expecting to get a free wig though I agree it seems harsh when it is medically induced alopecia. But I just need a note from my GP to say about my hair loss being medically induced so I can get the VAT off the cost. I am going to ask for a referral as you suggested to confirm my hair loss but it is already established that it's linked to Letrozole. In my case I think it's the combination of the chemotherapy, Herceptin and Letrozle -doxetaxel and Herceptin given together have been linked to hair loss now too a recent piece of research states! So I don't think my hair stood much of a chance!
I am seeing a specialist called Daniel Fields who has produced his own treatment and has had a lot of success with it. Cancerhair.co.uk vouched for him. It is very new and in the experimental stages. Of course am in a race against time as the longer it goes on the more the hair follicles will die off as you know. But sometimes he told me they simply gone into hibernation which is retrievable. He told me it takes a minimum of two months for the treatment to kick in. He's also had success he tells me with this treatment with chemotherapy and cold cap used together. I feel I have nothing to loose now so worth a punt! I hope he has found something as it would benefit thousands if he has.
I buy the minoxididl (private prescription) but because it is prescribed there is no VAT.
What are you on?
It may be that GP's can do vouchers for wigs but I don't think so. The vouchers I've heard about are for £100.
In order for us to make an automatic case for wigs we need the connection between our adjuvant therapy
and hairloss to be established and recognised (for chemo it is established of course).Yet one more reason for ladies suffering hairloss on hormone therapy to speak out. Perhaps this website could collate the incidence and severity of hairloss. Images of the types of hairloss (by pattern) could be shown and we could click on the image relating to our pattern of hairloss.If these choices were also made by drug type it would form a useful reference.it would need a requirement to log in to notify hair loss and possible only once to keep the figures true.
I agree Carolyn -the medical fraternity don't seem to want to know. I do hope breastcancercare write a document that covers long term hair loss. It's disgraceful we are not warned. And you're right I lost my hair through chemo and was looking forward to hair again but Letrozole has robbed me of this. Am practically bald on top hence the wig.
I dont understand why a GP can't write in support the need for a wig -it's not like it's going to cost them anything as its VAT we get off so no cost to the NHS. And my hair loss is obvious! To be honest am somewhat shocked that hair loss induced by medical treatment doesn't qualify you for a wig! They can chop my breast of and give me prothessis so why not a wig?
Flint the the treatment am on is not Regaine -it's a new treatment....I have to pay for it. Takes two months to kick in am told.
If you use minoxidil, (regaine) and the follicles aren't damaged, it can take four months before any regrowth appears.
Minoxidil is the only thing recommended by my GP or Dermatologist as an 'over the counter' drug but I do get a private prescription for it so I do not pay any VAT on it.
So far, giving me a voucher towards a wig has not been mentioned. I do not think the medics realise how short a time a wig lasts. Mine was about £250 and it got a lot of good comments but within a year the nape of the neck became like wire wool. I think serious wig wearing would cost at least £500 per year. I do not think a GP can issue a wig voucher.
I didn't have chemo but the hair loss since going on Letrozole has upset me far more than losing a breast and knowing that it is both progressive and permanent in my case increases the distress.
I agree that women should be advised prior to treatment that this can happen so that they can try everything possible to keep their hair. I am on a mission to get this message across to anyone who will listen. I hope the ladies on this forum with similar problems will join with me in that.
Good luck. I hope you get a referral and that the dermatologist can help.
Meanwhile, know you are not alone and that you have my heartfelt good wishes.
Thanks Flint -appreciate your advice. I will ask for a referral next week when I see my GP. Can GPs issue a wig prescription do you know? I buy mine but it would be good if I could get the VAT off! Am also doing some spray treatment morning and night plus a weekly treatment -only a mint.h but can't see any sign of change. The specialist hairdresser told me that this treatment can prevent the loss and can also restore hair. I think it maybe too late for me to be honest ( though I can feel bristle on my head nothing ever comes of it) and wish I had known about his treatment before starting my chemo etc as he is having extremely good results with people he sees early on.
Thank-you for for your understanding and advice. Am guessing this has/is a problem for you too?
I know there are far worse things in life but hair is bound up so much with self image - am sure I will get used to living without my hair in the end!! Xxx
The reason your hair is getting finer and finer is due to miniaturization of the follicle. Ultimately the follicle ceases to produce hair and cannot be 'woken-up'
Hair loss is very under-reported which is why I am trying to encourage women to do just as you have so that
the medics can prepare patients for this possibility.
Try to get referred to a dermatologist and skin biopsy so that an accurate diagnosis can be made.
I understand only too well how you feel. Good luck
Thanks for the replies. Well have made an appointment to see my GP. Have contacted my Oncologist to ask if there is an alternative but .havent heard back.
I don't get handfuls of hair falling out it just seems to have got finer and finer then it just disappears. I must admit yesterday I kept crying over it but second day of wearing my wig and am feeling a bit better. Think part of the problem was wearing my wig again reminded me of chemotherapy etc and felt such a backward step!
Am so shocked to read that basically this is extremely underreported as the oncology team focus on getting rid of the cancer so don't look at hairloss much.
Please DONT buy Nioxin -it's a waste of money -doesn't do a thing -I .used it for 6 months! Lol...all the faff of having to wash my hair daily and massaging the scalp complete waste of energy, time and money!! Sorry...
Please ask to be referred to a dermatologist- preferably one specialising in hair. A proper diagnosis may help you to cope better and something might be able to be done to help your hairloss - so many causes of alopecia.
Just found this post so am bumping it...
i have loads of hair loss mainly on top and sides. My hair has never returned properly since chemo plus Heceptin and now been in Letrozole for 13months and my hair is just disappearing.
Have tried all sorts of treatments and colours. Nothing works so have decided to resume wig wearing. It has left me in tears as I used to have a thick head of hair down to my shoulders -now it barely grows and some of it is still fuzzy!
My breast care nurse said I should get referred -I presume it's the GP that does it? My reading however says nothing can be done. Can't stop the Letrozole as I was extremely strongly positive for estrogen being a driver for my BC. Feel down hearted...& guilty about feeling like it over my hair as the treatment was successful!! Lol..
Since I last posted I have seen a dermatologist and been diagnosed with frontal fibrosing alopecia (FFA)
had some injections in my scalp and now on antibiotics. The aim is to slow it down - no cure. Hair loss is permanent.I am continuing with minoxidil with dermatologists approval,
Please see your GP. to get a referral to a dermatologist. I know it's hard to cope with another problem but there are so many types of alopecia and sometimes only a biopsy is diagnostic (I had one) and the sooner you have a proper diagnosis the better. How I wish I had sought help sooner rather than believing that hair would grow back after treatment.
I asked if the dermatologist knew if there was a link between FFA and letrozole but the answer was no. There is thought to be a hormonal element in FFA so it's possible there might be a link.
If your doctor agrees to give you a private prescription for minoxidil it will cost you a little over £20 per month. Just over £25 if you buy it over the counter. Be warned results are variable and you have to keep using the product to maintain any growth or prevent further loss if it does work for you.
Have you any body hairloss?. I lost all the hair on my legs first. then my eyebrows and arms before I noticed how thin my head hair was.
We are all different and there are many types of hairloss- not all of which are permanent. If you get proper professional advice soon you will probably find it much easier to cope than not knowing what is happening to you.
Good luck and please do keep us posted - the more info we can gather on this forum the better don't you think?
Hi ladies - thought i would give you an update.
My GP was very supportive and gave me a private prescription for Regaine for women.(Minoxidil) This is not available on NHS prescriptions.. My hair loss is confirmed as male pattern baldness.I was instructed to check out it is OK to use of Minoxidil with my oncologist and this was done via my BCN.
There is no guarantee the minoxidil will work of course and one has to keep using it to keep the regrowth if it is successful. Cost is just obver £21 for a months supply,
Best wishes and good luck to every one
I have been on lanastrozole since November. Initially I had hair loss.
I would wash hair and find quite a lot in the plug hole. Also I found I did not need to brush it as it was thinning so much.
Then the brand I was on was changed fewer aches, hot flashes etc and the hair has stopped falling out. In fact i can now use a brush again.
I use Dove Pre-age shampoo as well and that also helps as the lustre has returned.
#I agree it was a side effect I found most unhappy about.
I know I have only been on the drug for a short time but I hope that helps.
Thanks Bean14. Last time I went for an annual check I intended to bring this up but I did not see any consultant ( I have never seen an oncologist although I know my cases was discussed with one initially). That was a surprise, I will not see him again until year 5 apparently! Meanwhile I may request an appointment as you suggest - will get GP appointment over first but I fear what is lost will never grow back.
Thanks Mateface67. I spoke to my BCN and she said I could go onto tamoxifen but, from what you say, the result might be the same. Like you I had thick hair and the contrast is awful.Did the Nurkin help at all?
I have been reading some scholarly papers on the internet about this and apparently there is something that sometimes stops any further loss. This male baldness pattern hair loss for women in our position appears to be well documented and I think the description 'hair thinning' as a possible side effect grossly understates the case. Worse stll, despite that my BCN said the hair usually grows back, but not always as thickly, everything I have found says that this pattern of loss is permanent because the hair follicle is damaged. Again the BCN says Letrozole does not damage the hair follicle!
I am seeing my GP next week in the hope he will refer me to a dermatologist or other relevant specialist in early course. The distress is sufficient to make me consider stopping the Letrozole - I can't tell him more than that.
I;ve been on letrozole for over 3 years and have lost half my hair at the front and top. Hairline has shot back and I have bald patches above my ears. Has anyone else lost so much hair, or has anyone recovered from Letrozole induced hair loss? I don't mind having super smooth legs - that hair went very quickly -and I accept the wrinkles but I dislike this very much.