Is anyone else taking Letrozole after primary bc?

Most people on here seem to be taking Letrozole (Femara) for recurrence or secondaries. Are many taking it after primary bc, like me? I was given the choice which AI to have and after much research chose Letrozole. Has anyone actually been prescribed it by their oncologist?

Ann x

Hi Ann

Here is a link to the Femara publication written by BCC which you may find helpful to read whilst you await replies, please aslo feel free to call our freepphone helpline on 0808 800 6000 for a confidential chat with one of our team between 9-5 weekdays and 9-2 on Saturdays.

breastcancercare.org.uk/upload/pdf/bcc64_Femara.pdf

Best wishes
Lucy (BCC)

Ann,

Yes I am. I am taking it as part of a trial at the Marsden (Sutton) as recommended by my oncologist.

hi ann,

i received my treatment plan today and i have been given letrozole.

mine is a primary, early stage with no lymph involvement.

i believe that at our stage it has proved to be more effective than
tamoxifen.

gill x

Hi Gill

I would be interested to know what age you are. It may be that if you are over age 50 then letrozole is more effective - interesting comment since tamoxifen is more widely used. I have been told I will be going on letrozole after my 5 years with tamoxifen. My cancer was node positive and I see this as an extra precaution.

Take care.

Jeannie

I am 55 and I was told I would be taking an aromatase inhibitor, rather than Tamoxifen, as I am post-menopausal. It was just that many people on here seem to be on Arimidex.

Margaret - I am interested to hear that your oncologist recommended it. (I used to work in Sutton, many years ago, by the way.)

Gill - Mine was a primary, early stage with no lymph involvement, like yours.

Lucy(BCC) - Thank you. I had read the leaflet already and, as I say, done much research but I just seemed to keep coming across ladies who were taking it other than for primary bc. I was wondering why so few like me seemed to be on Letrozole. Maybe Arimidex causes more problems and so I read more about those ladies.

Ann x

Ann x

I have been taking Letrozole for 6 months now following a second recurrence. When I went to collect my prescription last Friday they hadn’t got any, said they would call the manufacturers. What I can’t understand is why when the last packet has been given out don’t they order more. I collect mine from the pharmacy adjoining my GP’s surgery every month so they know I will be calling in fact they give me the date.

Anyone else have problems?

Jan

Hi Everyone,
I was prescribed letrozole by my Onc - I have primary BC with sentinel node only involvement. I was offered chemo but declined so I can probably understand why it was precribed for me. Incidentally, after about six weeks on letrozole my guts went a bit haywire. There’s a question from me on this point further down.
Edinburghperson

Hi Ann I think we have been in touch before.

I was taking Nolvadex-D which was discontinued in November and I was then given Femara. I was Stage 2 primary BC with no node involvement in September 2007.

I stopped taking Femara last week because I was having bad migraines most days. I’ve had severe migraine since my early teens. My BCN suggested that I have a rest from it for a while and see if that helps.

Janice - I have had a problem with getting Femara since before Christmas. I managed to get a pack fro Tesco Pharmacy just before Christmas. Like you, I get my medication from the little pharmacy attached the GP’s surgery and they have not been able to get any at all. My BCN telephoned last week to say that Boots now guarantee that they will have Femara for anyone who needs it.

Jan

hi jeannie,

i will be 57 in april.

i asked my consultant today why letrozole not tamoxifen as i assumed that is what i would get and he said that trials had proved letrozole to be more effective. also that they now offer letrozole to women who have been on tamoxifen for 5years as it appears to take them 5 years on further with good results but no proof that it works the other way around.

janice…my consultant gave me a leaflet to hand to the pharmacy with the name of the suppliers of femara should there be any problems.
the pharmacist in boots said there had been a problem over christmas but that supplies would now be guarenteed.

gill x

I’m sorry to hear that some of you ladies are having problems getting hold of your medication. You would think all the services involved would realise that your medication is ongoing and have some in reserve.

I asked my GP for a year’s supply of Novadex D and was lucky enough to get it. I feel good about being able to pass the chemist without having to drop in every two months to pick up my prescription. Cannot help but think why we don’t get a longer supply in the first place - say 6 months.

Wishing you all well.

Jeannie

Hi All
Anne I have been on Letrozole for 2cm grade 2 primary with no nodes involved since August last year. I’m 64, obviously post menopausal, but took HRT from 1966 until 2002. My onc suggested that an aromatase inhibitors have proved more effective than Tamoxifen nowadays. Which one you get seems to be the choice of your onc/yourself. I think they are all considered as effective.
I had a problem with supply when I first started and was told by my local chemist that they don’t routinely stock it because of cost but will get it for me. I usually give them a weeks notice.
Cheers
Margaret

I understand that many pharmacies set up a direct account with the manufacturer and then they don’t have problems getting it. The one I use, next to the surgery, has done this and said it is sent there by courier in about 2 days. I have had no problems so far.

Jan - sorry you have had problems. Yes, we did ‘converse’ a while ago. I was wondering how you were getting on with it. I have been ok, but having just had radiotherapy as well, it is hard to know which symptoms are caused by what. Hope you feel better soon.

Jeannie - I also take thyroxine (for life) and I asked for a longer supply than for just two months and I was told that they are not allowed to prescribe more than two months of anything. Who says? Anyway, the best I got was that the doctor put 5 repeat prescriptions were to be allowed on the first one. I handed that into the chemist, I give them a ring when I am running out and they get the prescription from the GP without me having to visit him. When I go to the pharmacy a couple of days later, it is ready. I have done that with Femara, too. I suppose that way, they know when it needs to be in stock.

Ann x

I have been taking Letrozole for almost 4 years now. Initial diagnosis invasive lobular, 2.7cm, 10/11 node involvement. Had chemo then radio and straight onto Letrozole as oncologist said he was ‘very worried’ about me. Can’t say that the side effects have bothered me really, couldn’t tell what was left over from surgery and treatment and what was new from Letrozole. Have been very glad that it has got me this far and my only fear is what happens when I have to stop taking it!!

resilver - My diagnosis was also invasive lobular, 1.5cms plus satellites, so 1.9cms in all, but fortunately no node involvement. I am so pleased that Letrozole is working for you. As you say, it is hard to know what is causing any problems - stress, poor sleep, surgery, radiotherapy, coming off HRT, Letrozole - who knows? I am just glad to have something to take.

Ann x

Interestingly, I am also an invasive lobular lady with 15 lymph nodes involved due to a misdiagnosis of four years - GP refused me further investigation three times saying I had nothing to worry about. My surgeon also said he was “very worried” about me with regards my cancer (stage 3b) and my psychological state due to what I have been through. I am having 5 years on Tamoxifen as I was pre-menopausal when diagnosed - he said Arimidex was only for those who are post-menopausal. Thereafter, I have been told I will have a further 2.1/2 years on femara or whatever is equivalent when I reach that stage.

I’ve had over 4 years on Tamoxifen and doing well.

Jeannie

Hi ladies , I have been prescibed letrozole , was diagnosed mid november , very early stage , lumpectomy , am waiting my appointment for 25 rads . I´m 58 , post menopausal , took HRT for 18 years very happily . Now suffering horrendous hot flushes every 40 -50 minutes, and am very loathe to take this drug as I have been told it will make all menopausal problems much worse .
I live in Spain , so there is a real absence of information , that is the only drawback to spanish healthcare as otherwise they are marvolous.
Very reassuring to read all your experiences.

hi jackwagstaff,

i’m on letrozole, i’m 57 and post menopausal - had been on hrt for 12 years with no problems.

as soon as i had my diagnosis, december 2009, i came off my hrt and dreaded the thought of the hot flushes, so i dosed myself up with starflower oil and a good b complex to try and ward off the flushes and any depression, i also started drinking sage tea.

did this help? all i can say is that my symptoms were minimal. however - since i started taking the letrozole - on my third week now - i have been getting a lot more flushes, but they are decreasing. the sage tea does help a lot.

i am just determined to stick it out just for the ‘belt and braces’ effect of the letrozole.

good luck

gill x

Hi
I have been on Letrozole since August, firstly had a upset tummy often but its just now and again in last few months! Have put on weight though and also blood pressure gone up which has been caused by the Letrozole , so now on blood pressure tablets!!Has anyone elses gone up since on them? Had a masectomy and reocnstruction.with nodes removed , although only in 1 of them had cancer in . any comments? thanks julie I am 56 by the way

My mum (age 77) has been on Letrozole for about a year now. The two grade 3 lumps she had in each breast have practically shrunk to nothing. Doctor has said no surgery required and that the Letrozole will keep the lumps shrunken. Far as I know this was primary bc.
Anyway, side effects. She had extremly hot flushes for about the first 6 months she was taking the tablet. She tells me she didnt have hot flushes when going through the menopause (she is 77 now so about 20 years post meno). She felt extremly tired but that and the hot flushes seemed to have eased lately. Also her blood pressure went up initially but her most recent test says it has come down a bit. So seems she had all these side effects for the first 6 months of taking Letrozole but all seem to have eased now.