Happy to say Bone scan was good news, no sign of spreading, just got to put up with the aches and pains while the letrozole is doing its job, feeling very happy 
hi Milo,
I have been on Letrozole (herceptin biphosphonate and Zoladex) and I have had no progression since this treatment started. Onc even said the metastase (I have only one) shows signs of healing.
This treatment started 13 months ago after 4 years on Tamoxifen.
Long may this continue.
Worked great for me for just over 2 1/2 years then today told that was not controlling my cancer anymore and have put mean tamoxifen . After reading everyone elseās experience of Tamoxifen not holding out a lot of Hope really shot we,re all different I guess
Sorry to hear that Emperortooco, like you say everyone is different and hopefully Tamoxifen will work for you. I was on Tamoxifen for six month after FEC when it stopped working for me. x
Hi Milo,
i had my scan review and after 3 months on Letrozole my breast tumour has shrunk. I asked my Comsultant how long Letrozole night work, knowing itās like asking how long is a piece of string. The answer was that statistically it is 8 months but she has a patient still going strong after 6 years.
I was assured that there are other hormone therapies that could be used if Lectrozole doesnāt. Also research going on to find out why Lectrozole might not work. Clinical trials that might be available.
So please try to keep positive.
Susan xx
Susan (Ponsmuir), I suspect Dr C has cited the median duration rather than the average duration. My understanding is that the average duration is about 18 months. But even if you take the median figure, it means that Letrozole will work in excess of 8 months for 50% of patients (and some find it works for years).
Milo, so pleased to read that Letrozole is finally helping after the initial doubt. Just goes to show that drugs which essentially do the same job (i.e, prevent hormone sensitive cancer being stimulated by oestrogen), but work in a different way, can have vastly different outcomes. I suspect the reason your doctor initially told you that Letrozole was unlikely to work, was because your cancer did not respond to oestrogen deprivation while you were taking Tamoxifen, and therefore, might not respond to any treatment involving oestrogen deprivation. Alternatively, they may also have thought that as your cancer progressed quickly while you were taking Tamoxifen, that it may be the type that quickly adapts to oestrogen deprivation by finding different pathways to itās stimulus. Cancers that are adept at finding different pathways continue in this vein, irrespective of whether they are being controilled by SERMS or Aromatase Inhibitors. But as you, and others have shown, that is not necessarily the case.
Thanks Lemongrove xx
Hi everyone, with was dx with BC in 2005. Had bilateral mx with removal of ovaries as was oestrogen positive plus 5 years of Tamoxifen. Recently found to have bone mets in sternum, fibrous and muscular tissue and mammary lymph nodes behind sternum.
my BC nurse said this isnāt a common place for secondaries. I was put on Letrozole about 4 weeks ago and up to now have only suffered slightly āhotterā hot flushes than normalā¦ I know itās early days for any side effects but was wondering if anyone has noticed any weight gain or weight loss after starting Letrozole? I also would like to know if anyone has similar secondaries in same place as me but not sure where to ask this as Iām not too good at navigating this site. So apologies if Iāve upset anyone by doing this wrong.
does anyone have any idea how long they leave you before deciding whether Letrozole is working? It will only just be 6 weeks when I next see oncologist and not sure what he will be able to tell me at that stage as its not long to see any changes.
regards
Beryl
I was stage 4 from the onset, Sept 2010. I have/had multiple lung nodules, too numerous to count. I have been on letrozole since then (3yrs this Sept) and last scan in Feb showed no evidence of disease! All nodules gone!! Long may it continue!
Good for you Glo. Thanks for posting - it gives us all hope.
Susan
Beryl, I have just started letrozole too. They are re-scanning me in two months to check. I have just finished ec chemo and have bone mets so hope this will maintain me. Ive had more hot flushes and night sweats since starting on it.
Mel xxx
Hi Buffy
Iāve been on Letrozole now for only 5weeks and I am having terrible night sweats I didnt realise that this drug caused this.
Iām at 3 of 15 rads.so long way to go yet
Beryl, my understanding is that it can take three to four months before there is any detectable efffect (particularly with bone mets).
My impression (from speaking to others), is that Oncologists generally order a CT scan about three months after endocrine treatment is commenced. However I also know that results can take longer to observe, with bone mets and so scanning is sometimes done at six months. But please donāt worry that there may be a delay in finding out whether itās working. At your next appointment they will will almost include a C153 test (tumour marker test), within your general blood test. If you have had a tumour marker test before, this will allow them to tell is tumour markers are going up or down. If they have not done a tumour marker test before, it will provide a base line.
Good luck with your treatment.
Ann W, yes Letrozole can cause menopausal type side effects. The symptoms that many women experience during the menopause are caused by a reduction of oestrogen, and as Letrozole reduces oestrogen the same side effects are frequently experienced.
Letrozole works by inhibiting the production of an enzyme called aromotase (which is why it is called an aromotase inhibiter). Aromotase is an enzyme which allows the body to convert androgens into oestrogen (which is the main way oestrogen is produced in post menopausal women). Although you are post menopausal, you may have had quite a bit of oestrogen sloshing around in your system, and now this is being controlled you are feeling the effects.
Investigate ways of minimising menopausal symptoms.
Lemongrove I am a older lady who this week was given Letrozole it is a long time since I went through the menopause and at that time I had dreadful night sweats I hope I donāt have to go through that again as they lasted so long I also hope my bones will be ok as they are fine at the moment its such a shock to have to go through all this at my age when I have never really been ill in my life before only the odd cold etc such a worry for the older lady sho has no one to look after me I hope I will be ok to carry on for a few more years yet
Love to you all
Thanks Mel,
I am having CT in 2 months I will have been on it for 3 months then. Then lump on my sternum does seem to be slightly smaller though although I am also having a lot of palpitations. Not sure if this is connected or not. A friend of mine had to come off Letrozole a few years ago as her hair started falling out quite dramatically. I have noticed mine is losing a tiny bit so am going to keep my eye on this.
Regards
Beryl
Hi,
I too have just started Letrozole and am having massive hot flushes (although this seems a small price to pay if works on the squatters in my lungs). The other night I was so hot I was reduced to standing in the garden flapping my dressing gown up and down like some kind of giant albino bat. At least it gave the neighbours a laugh.
Della x
Hi Della
I know all the steps of the dressing gown dance. I have been doing it for 2 weeks now, luckily I dont have any neighbours to worry about. I also notice I am gaining weight 5lbs in total up to now, so if it keeps going up I will look like a balloon in the garden not a giant bat (lol)
Hi Assisi
I am an older lady too (69) who thought she was well over those hot flushes but if we have to put up with them again so be it if the treatment is doing us some good
Ann W xx
Hi
I was on letrozole for 18 months.i found that at the beginning I did have aches and pains and hot flushes.I took omega 3 and glucosgamine for the aches and pains,onc recommended that,and the hot flushes eased as time went on.I did put on weght but not an excessive amount.I did try to do some walking every day which helped with the weight gain and also made me feel more energetic .fatigue has always been a problem since I was first dx.
I am also in my 60ās so had already had the hot flushes before.Letrozole did keep me stable for 18 months so the seās always seemed a small price to pay.Every treatment does have some seāsā¦some worse than others and not everyone reats in the same way.rReally hope you get good results.
L xx
I just started Letrozole this morning, so probably too early to tell how SEs will be. I had a couple of months on Tamoxifen last year and was fine apart from hot flushes, which werenāt too bad either, so hoping Letrozole will be similar. Having worked through FEC-T for primary dx and then in last year being on Capecitabine then Vinorelbine, donāt seem to have had spectacular success with chemo, so onc thinks itās time to try a different approach.