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How long has letrozole worked for you ?

Member

Re: How long has letrozole worked for you ?

Hi polly m

i have been on letrazole for 2 years now and it seems to be keeping cancer at bay but I do have a lot of side effects, I have bone pain and depression ( I can cry at the drop of  a hat) but I think I am OK as I said it is keeping cancer at bay. Two of my grandchildren dropped in today aged 3 &8 this is what keeps me fighting.

Member

Re: How long has letrozole worked for you ?

Thank you for the reply Kay.  I am sorry I am only just doing this but I thought I had already done it!  I am so sorry to hear all that you have been through.  You sound like you have had a really tough time.  I hope the treatment you are currently having works better than your hormone treatment.  I will find out tomorrow if Letrozole has been working so far if my lump turns out to be benign!  Take care xx

 

Member

Re: How long has letrozole worked for you ?

Hi Polly,

i am er+8 prog+6 her2 neg I have had no success on hormone treatment apart from 18 months 7 years ago which worked for 18 months exemastane 2 months tomoxifen 6 months then blood clot on lung then  letrizole  though kept on it for 12 months it grew slowly after 2 months and had radiotherapy whilst on it which I think caused segments to get to my liver as radiotherapy can cause this to happen as well as shrink 

I have also had 3 chemotherapy and still having eribulin now 

i hope letrozole works for you like it has for others that have been on it for a good few years 

 

kay

 

 

Member

Re: How long has letrozole worked for you ?

Hello ladies,

Firstly, I am sorry for posting on this secondaries thread without any such diagnosis but I do have a question about a new breast lump I have whilst on Letrozole - I know that you all have lots of knowledge of this drug and its effectiveness.

I had BC left breast in 2007 which was her2+ and er and pr+ with 4/7 lypmh nodes. I had mastectomy, ANC, Chemo Rads and Herceptin.  I was on Tamoxifen for 5 years and then nothing for 1 year (as 5 years was standard then) until I ended up back under the oncologist again because of shoulder pain (scan clear).  She put me back on Tam until I suffered intermenstrual bleeding and then switched me to Letrozole which I have been taking for 2 years.

I am 54 now and postmenopausal according to bloods.  Unfortunately, I have now developed a small lump in my right breast.  I have been referred to the rapid assessment clinic and am going on Wednesday.  I am driving myself mad with worry.

From what I think I know (!), this new lump is less likely to be a cyst or fibroadenoma given my age and medication.  It would be a new primary and not a secondary as it is in other breast and it is likely to be a new type of cancer. I wonder if any of you have any experience of this kind of thing happening as I am finding it difficult to find people who have had similar.  

Perhaps I am wrong about the cysts and they could be a possibility on Letrozole?  I have searched the forums and cannot really find anything substantial.

Any advice or input would be really appreciated even if it is to point me in the direction of somewhere else I could look!

Thanks xxxx

Community Champion

Re: How long has letrozole worked for you ?

Hi

Over the years of having mets I have had some good long periods of stability with hormonal treatments. Firstly anastrozole (for nearly 5 years) then, a few years later (with other treatments in between) about 18 months on letrozole.  These tiny tablets can work wonders and by not having to visit your hospital or oncologist every 3 weeks, as with other more invasive treatments, I found I could actually forget about the little uggers!  It does take time though so be kind to yourselves, particularly when trying to get over the shock of being told your now have secondary BC.  Finding somewhere, such as a Maggie's centre can be a big help although unfortunately not everywhere has this, or similar, places to go for help with.  A lot of hospitals don't even seem to have a BCN who specialises in secondary BC so you can feel very alone at first.  This forum is also a great source of support and information from real people who understand what it all feels like.  You can also find out about local groups that are often arranged informally by forum members or some areas have groups arranged by BCC themselves - check out the 'Meet Ups' section.

Wishing you well with your treatments.  There can be quite a few side effects from these little pills by the way, including most commonly aches and joint pains.  The main, home, page of the forum has some good advice under the 'undergoing treatment' section which applies to you whether you have primary or secondary BC, the side effects are all the same!

Nicky x

Community Champion

Re: How long has letrozole worked for you ?

Hi Clarence, been on Letrozole 3 months now. It was a big blow as I hadn't finished my radiotherapy when I was called for a second scan. My mets are small, but I have visions, sometimes, of them growing overnight!! I'm getting great help from my Maggies centre. I've had a couple of sleep management sessions, and am now on a mindfulness course. From this I'm slowly accepting that they are there. They aren't going to go away, and life is what it is. I'm cherishing the good bits in life more, and I can often go all day now without thinking of the bl**dy things! Good luck. X

Member

Re: How long has letrozole worked for you ?

I've just started letrozole so hope it works for me. Do you manage to forget you have mets? I'm finding it difficult as it is so new
Member

Re: How long has letrozole worked for you ?

I have been on letrasol 4 yrs .I have bad mood swings every one stayes out of my way . My bones are so sore .put waight on .can't sleep because I get so hot ..biut I thank God I am still hear. Had breast cancer in my left breast xxx
Member

Re: How long has letrozole worked for you ?

Thanks for explaining xx take care
Community Champion

Re: How long has letrozole worked for you ?

Hello sheep
Tamox Is mainly prescribed for pre menopausal ladies but other hormones like anastrozole , letrozole and exemestance are for post menopausal ladies. At 50 you are sort of on the cusp and they might offer you a injection monthly called zoladex to put you in the post menopausal status. A lot of ladies here have it.
I had chemo when I was 51 which switched the periods off but had to take tamox for two years and then was able to switch to anastrozole once I was well and truly through it.
Other ladies might just be able to explain things better but that is the gist of it.
All the best xxx
Member

Re: How long has letrozole worked for you ?

Hi I'm currently on tamoxifen ( got stage 4 bc with secondaries in liver ) had appointment at once last month - had a blood test to see if I'd gone through menopause ( I'm 50 ) does anyone know what this means ???? He didn't say xxxx
Community Champion

Re: How long has letrozole worked for you ?

Hi gardener

I think the dose for letrozole, and all hormone tablets, is the same for everyone.

Happy for anyone to correct me but having been on Tamoxifen, anastrozole and letrozole I know I've only ever taken the prescribed dose as per the packet instructions (and obviously the oncs orescription!)

Nicky x

ps I had 4 and a bit years out of anastrozole after my bone mets were diagnosed before having to move on to other treatments and have also been on letrozole after finishing Docetaxel in 2014.

Member

Re: How long has letrozole worked for you ?


@Fidonald wrote:

It's working well.  I was told in September 2016 that I had stage IV breast cancer and had my first appointment with my oncologist on 20th October.  At that stage he asked me if i had understood what had been told to me - odd questions so i repeated i was told that my cancer is incurable and the best that could be hope for was to shrink the tumours and give me some more time.  He had wanted to start the chemo almost immediately but my partner said we were getting married on 2nd December and asked if it would be terribly detrimental to postpone the chemo till after that.  I was put on letrozole and at my follow up appointment on 28 th Novermber, was given the very good news that the tmour was shrinking and that my lung tumours were decreasing too!  Oh happy days - the wedding was marvellous and at my next appointment (9th January) he said there was steady prorgress.  I am now on letrozole for the foreseeable future - what a difference to October!  I feel fine and am told I look well.  I feel i can look forward now - i think it is about making the best you can out of a difficult situation.

 

I made a bit of a mistake by going to one of the cancer centres - they mean well, that is for sure, but some of us prefer not to be confronted with doom and gloom so i will not be going back - for me it is all about being positive and i am afraid i cannot let myself be dragged down bythe ankles.  I do not allow myself to think of the long list of ailments/conditions I have - it is better to think of what I have been able to achieve in spite of all that.

 

Side effects of Letrozole - I can put up with them - i don't always sleep very well, my fingers are a bit stiff and occasionally i get pain in the breast - I think that is better than any of the alternatives!!  I'm still here but I am not sure i would have been able to withstand chemo.  thankful for the letrozole and thankful for the wonerful oncologist who looks after me.

 

Hope more people can report the positive side of Letrozole.


I am interested to know your dosage level - I am also stage IV breast cancer and am on 2.5mg.  I really   hope it is as effective as yours. Thanks

Member

Re: How long has letrozole worked for you ?

Hi there, I never had tamoxifen, my first line treatment for secondaries in bones and lung was letrozole, we have doctors in the family and they told me to ask for this so I did. It lasted 5 years before it failed. I had no side effects for the first six months and then fatigue for the rest of the time, and I mean real fatigue, I had to change my lifestyle, but apart from that I was fine.

as you've been on tamoxifen for 5 you can maybe expect letrozole to work for 2 and a half years maybe more. It seems the first ones work the longest.  This is what I have been told.

good luck to you, it all sounds very hopeful.

hugs to all as ever xxxx

Member

Re: How long has letrozole worked for you ?

Hi 

I came onto this site as i have just started taking Letrozole after 5 years on tamoxifen ,  I was a bit worried about changing tablets (better the devil you know ) but after reading everyones statements i am alot less worried . Hopefully it works as well for me as it has done for all you survivors Heart

Member

Re: How long has letrozole worked for you ?

Very interesting reading ladies. I was diagnosed with lung metastasis 2 weeks ago. Luckily they are tiny. I was expecting chemo, but have been put on Letrozole. My oncology is very optimistic that they could totally disappear. I just need to have tumour markers and a bone scan. I fell great I have no lung symptoms. I feel I can get on with life again after 6 weeks of hell.
Member

Re: How long has letrozole worked for you ?

It's working well.  I was told in September 2016 that I had stage IV breast cancer and had my first appointment with my oncologist on 20th October.  At that stage he asked me if i had understood what had been told to me - odd questions so i repeated i was told that my cancer is incurable and the best that could be hope for was to shrink the tumours and give me some more time.  He had wanted to start the chemo almost immediately but my partner said we were getting married on 2nd December and asked if it would be terribly detrimental to postpone the chemo till after that.  I was put on letrozole and at my follow up appointment on 28 th Novermber, was given the very good news that the tmour was shrinking and that my lung tumours were decreasing too!  Oh happy days - the wedding was marvellous and at my next appointment (9th January) he said there was steady prorgress.  I am now on letrozole for the foreseeable future - what a difference to October!  I feel fine and am told I look well.  I feel i can look forward now - i think it is about making the best you can out of a difficult situation.

 

I made a bit of a mistake by going to one of the cancer centres - they mean well, that is for sure, but some of us prefer not to be confronted with doom and gloom so i will not be going back - for me it is all about being positive and i am afraid i cannot let myself be dragged down bythe ankles.  I do not allow myself to think of the long list of ailments/conditions I have - it is better to think of what I have been able to achieve in spite of all that.

 

Side effects of Letrozole - I can put up with them - i don't always sleep very well, my fingers are a bit stiff and occasionally i get pain in the breast - I think that is better than any of the alternatives!!  I'm still here but I am not sure i would have been able to withstand chemo.  thankful for the letrozole and thankful for the wonerful oncologist who looks after me.

 

Hope more people can report the positive side of Letrozole.

Member

Re: How long has letrozole worked for you ?

Previous comment referred to a post from Lynnq

Lily

Member

Re: How long has letrozole worked for you ?

Good to read your comments about letrozole working well, just started on it only complaint so far is achy joints and a bit of weight gain.

Read so many negative things about it on other sites so was great to read something positive.

Hoping it works well for me

Lily x
Community Champion

Re: How long has letrozole worked for you ?

Meat...hope you managed to chat to your onc?

 

how did it go?

 

i hope we havent put you off....!

 

i  see you havent returned to the forum.....do let us know how things go? We wont mind which section of the forum you decide to post on, it would be lovely to hear how things are going for youxx

 

hugs,

 

Moijan💚💚💚