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Flint
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since
22-08-2013
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04-06-2016
07:34
Hi happyboobs2 I am sorry to put the same record on again but please ask to see a dermatologist. What you are describing is what has happened to me. You may have a different form of alopecia of course but thinning at the front is not usual in women - even those on AI's I am diagnosed with Frontal FIbrosing Alopecia and hair loss is permanent and progessive although some treatments can slow it down.there are lots of images on the web if you want to see how your hair loss compares- thats how I found out and got to see the dermatologist. It started within 6 months of Letrozole although I noticed only my eyebrows and loss of hair on my legs at first. I, too, accepted the 'it will gow back after treatment mantra' for about two years. How I wish I hadn't. please do have the posibility of this this type of alopecia eliminated or otherwise by specialists. I have now, along with many other women, offered myself up to the chaps who are doing some research into this disease in my case in the hope of them confirming or denying any link with these drugs. it will not help me but it may help women in the future,
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01-06-2016
07:45
Hello Kathleen54 I think what you are describing is known as formication. I had it for a while post menopause then it stopped, I hope yours will soon. Also, if your skin is only slightly dry it can itch severely, One of the best moisturisers for atopic skin conditions is Doublebase and it is available on prescription if your doctor thinks it an appropriate. Best wishes
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19-05-2016
02:55
I am almost five years on and will see the consultant at my last and fifth follow up. I saw a consultant year one and two - exam of breast and lymph. Year three and four just mamogram. I have never seen an oncologist. I have often wondered why we are not given any blood tests at follow up. I found out at diagnosis that initially an MRI scan is given at my hospital to women with lobular cancer but not ductal. I understand how you feel.
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20-04-2016
07:59
I have the same symptoms and recommend Systane Balance eye drops (make sure to get the 'Balance' variety) As to the hair please ask to be referred to a dermatologist. I am diagnosed with Frontal Fibrosing Alopecia there is no cure but hope to slow it down with various treatments the derm. is carrying out. FFA is known to have a hormonal connection and also an auto-immune connection. My blood markers for inflamation shot up after I started on Letrozole and dry eyes are also connected with auto-immune. Please do not be frightened by all this the drops will sort your eyes out but you do need expert diagnosis of your hair . Minoxydol is not available on the NHS but a private prescription will cost about £21 per month. Are your eyebrows OK? My dermatologist has not recommended any special shampoo but approves of my habit of using baby shampoo. Good luck and let us know how you are getting on.
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15-04-2016
11:50
I will soon have finished 5 years of Letrozole too and have been told that will be it.. A friend of mine has been told 10 years. How are these things decided? Is it on lymph status and tumour grade? It would be helpful to know but I can't find any references to it, only references for a total of 10 years hormone treatment based on 5 Tamoxifen followed by five AI.
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02-04-2016
05:20
Yes, I feel it has aged me. I thought letrozole is given only to post menapausal women
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27-02-2016
04:26
Hi Soi Your reply interested me I had mx but no rads. I think there has been a study about when rads should be offered after mx. I didn't have chemo as nothing was found in the lymph glands (or in the lymph and blood vessels in the tumour itself) I hope all goes well for you from now on
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24-02-2016
06:19
Hello Lisa A friend of mine had full clearance and mild lymphdema and wore a sleeve for a while. Now she rarely if ever needs it. However, she did manage to see a specialist lymphodema nurse who explained how to massage to help drain the fluid. Apparently it is a light type of massage (directed towards the heart) almost as if fingers just brush the surface.My friend said it works, I am sure this would help you but you need to be shown how do it correctly. Have you seen a specialist lymphoma nurse? They are a bit thin on the ground. I do hope you get the help you need and can eventually leave the sleeve off if only occasionally. My friend is still very careful to cover her arms to protect against insect bites and is very very careful to cover arm against scratches when she is gardening. I hope this gives you reason to feel a bit better.
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24-02-2016
05:59
The peak for recurrences is still within the first two or three years.
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24-02-2016
01:34
At my second annual check up I asked the doctor if use of hormone treatments had altered the peak at which re occurence happens (i.e did it still peak in the first two or three years). The reply was that the peak had not altered.
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16-02-2016
08:25
Hi Carolyn One of the things that my consultant said to me was that hair loss is probably under reported by BC patients. My advice is that you tell your care team pronto and do not be fobbed off with 'it will grow back after treatment' Also visit your GP with a view to getting referred to a dermatologist. If lots of us keep turning up in clinic perhaps more serious attention will be paid to this upsetting aspect of treatment. From what the GP and dermatologist tell me there are very few things that are (only sometimes) effective in treating hair loss and there are so many different types/causes of alopecia that the sooner the reason for it is established the more hope there is for the best outcome.
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14-02-2016
09:19
1 Hug
Hi NJ I got my prosthesis from the hospital where I had surgery ( NHS) Did you not even get brochures for mastectomy wear suppliers? if you still need to get equipped my advice would be to look online at Nicola Jayne and Amoena I have found both to be be very helpful and they will give you telephone advice if you can't make it to a branch. From speaking to women who had BC surgery privately I know you are not alone Best wishes for your recovery
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13-02-2016
09:34
I had mx 2011 no other treatment apart from letrozole. I saw a consultant at year 1 and 2 and have yearly mammograms. I am told I will not see consultant again until year 5 when I hope to be discharged. I have never seen an oncologist.
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30-01-2016
09:45
Hello Koshlake 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?
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12-12-2015
03:58
Hi Mazzi I am four years on from single mx no recon. and without auxillary clearance. It took me a ages to get my arm back to normal even though I did the exercises religiously three to four times a day. Every little bit higher reach up the wall was quite a thrill. To be honest my arm/shoulder wasn't properly right for about two years and it was doing a floor exercise of lifting head chest and opposite arm and leg off the floor that really sorted it in the end (do not do this now) The important thing is not to get discouraged. As far as pain is concerned you really do have to get your retaliation in first and take the painkillers before you get the pain then wean yourself off. I took painkillers about half an hour to an hour before exercises. I think the anaesthetic and shock of the op to the body affects our emotions again this wore off after a few weeks Best wishes to everyone.
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03-12-2015
01:03
Hi Jennie I had my mx four years ago no recon. I didn't want implants or all the extra surgery/scars and longer recovery time,. I was very disciplined about doing the exercises.Even so it seemed to take ages for my arm to get back to normal and a couple of years, possibly three, for the tightness in my chest to go so don't despair. I have not regretted my decision. Good luck with your recovery.
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29-10-2015
04:23
Hi Kirsty I have been taking letrozole for almost 4 years. No chemo. I am bald above my ears and my hairline has receded 2 inches but I realise that I do not have the typical balding on the crown that men get. I have an appointment booked to have a scalp biopsy at my local hospital dermatology department. So far I am told my hair will not come back. However, please see your GP, mine has been very supportive. I will post in the forum when I get any news about my own case and I am determined to quiz the expert on any role Letrozole may have played. I know the strangest coincidences do happen but my hair was nice and thick before. If anyone is suffering in silence please don't. Nothing will be done to help us, or warn future patients unless we speak out. Best wishes to everyone
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20-05-2015
09:17
Many women are being prescribed hormone treatment for 10 years following the results of some research published last year. i have checked and I will be on letrozole only for the 5 years I was told initially. It all depends on our individual cases. You might be able to take a different drug so it's worth discussing your problems with your BCN.
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11-05-2015
07:54
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 .
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25-04-2015
10:21
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.
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