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How long has letrozole worked for you ?

112 REPLIES 112
Member

Re: How long has letrozole worked for you ?

Hi,

you have a primary cancer, has your cancer spread elsewhere and therefore you have secondary cancer?

Following my primary cancer I took Tamoxifen for 5 years and then Letrezole for 5 years. The cancer spread to my bones 16 years after my primary. So to answer your question it definitely kept me clear for 5 years.

If you are dealing with secondary cancer then many ladies can still get years out of Letrezole, the hormonal drugs can be very effective if you are estrogen positive. 

Hope this helps, please ask more if not

xxx

 

Member

Re: How long has letrozole worked for you ?

Hi I’m 52 and had a missed diagnosis in 2016 I was diagnosed with BC Feb 2018
I have had a double mastectomy both breast was my choice as I didn’t want to go through that again
I’ve had chemo and radiotherapy and my axillary nodes removed
I started letrozole last month and experiencing all the symptoms and I feel are the symptoms worth it
Does anyone know whet the % is for extended life for taking letrozole?
Member

Re: How long has letrozole worked for you ?

Hi moijan, I was first diagnosed with bc ( her2 - er + ) in November 2012 and was put on tamoxifen. Unfortunately in May 2015 it had spread to my bones and I was then put on letrozole. Could I please ask when your primary was, and where about’s are your secondaries?

I hope you are keeping well xx
Community Champion

Re: How long has letrozole worked for you ?

Hi ladies,

''just a few words of encouragement here....whichever drug you are on now...you are doing your very best to fight this scourge and I want to express my admiration.

I was was told I could stop my letro and I did, and the bc came back....if I could have that time again...my choice would have been to stay on it.........

''you are all...whichever drug you happen to be on....following advice and that gives you an improved chance..because you know you are doing the best you can.- what more can you do?

try to avoid too much stress, too much sugar and too much alcohol..........and....after Xmas. Get back on track with the healthy options you want to be on.

love and hugs

Moijanxx💚💚💚

Member

Re: How long has letrozole worked for you ?

Good luck Polly hope your treatment works for you,

Its nice to read that letrozole can work for years, i have only just started taking it after my secondaries diagnoses three months ago.

Some of you ladies seem to have been doing well for over five years which is great to read because in these early days I am just hoping that I will get that amount of time too - so well done girls sharing the positivity ... because we need it Smiley Happy
Community Champion

Re: How long has letrozole worked for you ?

Hi Polly,

 

what is your our treatment plan, now then?

 

very best of luck and keep us up to date

Mi8jan💚💚💚

Member

Re: How long has letrozole worked for you ?

Thank you Kay and Moijan!  I have just had my results - they found 30mm of DCIS but cannot find my primary!  The DCIS is er/pr neg so Letrozole would not have stopped it anyway!  

Good luck with your treatments and thanks again for your time,

xxx

Member

Re: How long has letrozole worked for you ?

Hi polym

i have also been on exemastane and it did only work for 2 months I could not have it with the everolumiseb(spelt wrong) combo as I have had too many other treatments perhaps you could ask about the combo I think you could have had 1 chemo and 1 hormone to be eligible for it 

also new tumours can grow when on treatments as they stop working that happened to me on arimadex after 18 months which was my first treatment with SBC 

 

hope you get sorted 

kay

Community Champion

Re: How long has letrozole worked for you ?

Hi Polly, what a shock for you.  My initial cancer was missed in 2000...by the time it was diagnosed(by me) in 2001, the breast unit found an 8x7cm tumour and the op showed 12/13 lymph nodes.,....I do understand if you are feeling angry....it's a struggle to ensure all the NHS staff get things right!

 

hopefully you will feel much more settled soon x

 

Moijan💚

Member

Re: How long has letrozole worked for you ?

HI Nicky

Thanks for your reply -  I think I remember you when I was first on the forum in 2007?!  

I have not had too many side effects with Letrozole although struggled with loss of libido and dryness etc!  My BP is on the low side.  I suppose I will just have to see how it goes with Exestamane if indeed that is what they put me on.

Polly xx

 

Member

Re: How long has letrozole worked for you ?

Hallo Windflower
I have been on exemestane for 2 years and been stable. As Carolyn says it does much the same as letrozole. I haven't had a CT scan for 2 years but have had  a couple of bone scans, My onc said that he didn't want to do too many CT scans because of the radiation involved. I don't know how the radiation compares with bone scans which use radioactive dyes (you have to wee in a special toilet at the hospital). Best not to think too hard between scans, not easy I know.

Bon x

Member

Re: How long has letrozole worked for you ?

Hello windflower

Yes tumour markers are an extra blood test done to monitor activity of cancer I think.
Sounds like u are much the same stage as me but I'm on letrozole ..there are 3 hormone therapy much the same ...an anastrozole, letrozole and exmestance .. I'm hoping mine is doing it's job still .
I'm getting my scan results on Wednesday. .squeaky bum time ...I only get ct scans every 8 months ( far too long) and see oncologist every 4 months ..
I must say I do bury my head in the sand and don't try to think or ask too much ..just have my denosumab jabs every 6 weeks and pop the little daily pill !!
Hugs xx
Member

Re: How long has letrozole worked for you ?

Hello all,

What are TMs - does it stand for Tumour Markers?  I don't think I have ever had these, although I do have bloods taken every 12 weeks.  I am on Anastrozole and Denosumab and have been stable for about 2 years.  I know that this could change any time.  I haven't had a CT scan for 6 months so will query this at my next clinic appointment in 3 weeks' time.  Is Letrozole similar to Anastrozole?  I'm afraid I don't really know much about treatments.

Windflower

Member

Re: How long has letrozole worked for you ?

Hello nicky
That's interesting that u have never had TMs done either. .I read the threads and it seems to be a measure of how well treatments are working for a lot of ladies. ...
I have asked several times and oncologist just poo poos them as not important. ...
You must be finding just the hormone regime so much easier now after the chemo ...I'm just hoping letrozole is doing it's job ..it's 2 years now and sometime it's going to let me down
Hugs xx
Community Champion

Re: How long has letrozole worked for you ?

Hi Lynn

Im only on exemestane. Ideally I should be on the combination of E/E but my onc prescribed me just the hormone tablet when I'd finished Eribulin as a stop gap before starting a trial which is what we had expected me to do. However it turns out I can't go on the expected trial as my disease is stable and you can only be accepted (well, on the one/s I would be eligible for) if your disease is progressing. From what I've read of the E/E combo you can't have it if you have already had exemestane on its own (and by that I mean NICE don't allow it) however I will ask at my next oncology appointment. I am hoping it will hold things stable for a while at least but will wait to see when I have my next scan. I don't get TMs done unfortunately which I know for a lot of ladies with SBC this shows an early warning of when a treatment isn't being as effective.

Nicky x

Member

Re: How long has letrozole worked for you ?

Hi Nicky I wonder if I might ask you a couple of questions.

 

I was on letrozole for a,most five years and it kept me stable.  My TMs started to go up about six months ago, recently had a scan which showed subtle changes so they have put me on exemestane/everolimus combination.  Is this what you are on now, or is it still just the one.

 

i had very few SEs with letrozole and am hoping that I can be lucky again with this combo.

 

 

Community Champion

Re: How long has letrozole worked for you ?

No reason to apologise pollym, we're here to help when we can.

I have recently moved to exestamane having had letrozole a few years ago.  I can't say I've noticed any difference in side effects so I hope the same happens for you.  The only thing that I do notice whilst on any form of hormonal treatment is my blood pressure goes up so I keep an eye on that but otherwise nothing unusual to report.

Nicky x

Member

Re: How long has letrozole worked for you ?

 

Just an update to my previous post - My staging scans showed no spread to lungs, liver or bones.

However, following mastectomy and SNB last week for high grade DCIS micromets found in my lymph nodes.

 

This means I have managed to grow another invasive cancer whilst on Letrozole on the other side!  Surgeon said to stop taking it as obviously not working for me.  This is despite them not knowing whether the new cancer is ER+ or not!  She reckons they may not even find my invasive cancer but as 80% of cancers are ER+ they will treat the new one as such if they don't find it and switch me to new medication - Exomestane - has anybody else been moved to this?  I just wondered how it compared to Letrozole?

 

I am sorry to barge in the secondaries thread but you ladies here have better experience of switching hormone meds when they arent working than the ladies in the primary thread!

 

Take care everyone xxx

 

 

 

 

 

Member

Re: How long has letrozole worked for you ?

You could be describing me sue x
Member

Re: How long has letrozole worked for you ?

I can relate to you Anniej I do mindfulness and find it helps me to be calm on days when I get angry with myself. My sleep pattern is all over the place I sometimes get 2 hours (this is when mindfulness helps) sometimes 8. I have been through menapause but now have hot flushes with meds. Sending hugs x
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
Member

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💚💚💚

Community Champion

Re: How long has letrozole worked for you ?

Hi Ardyrankin...do you mean that the letro has got rid of your mets? Thats stupendous!

I have lver mets, but it didnt touch them when they put me back on it!

 

oh, the very best for you on Letro....id love to be on it. however Eribulin has been working well with me....have an mri next week to see if the picture fits the words!

 

hugs,

 

Moijanxx💚💚💚

Member

Re: How long has letrozole worked for you ?

I have been on Letrozole for 3 years - mets to liver - primary 1997 left breast - left mastectomy, chemo, radiation.

Just yesterday I got the good news that I was NED!

Praying that it continues to work.

Community Champion

Re: How long has letrozole worked for you ?

Hi Meat,

 

recent news has been that people do better if they stay on Letrozole for ten years now.

 

 

https://www.theguardian.com/society/2016/jun/05/breast-cancer-drugs-decade-study-aromatase-inhibitor...

 

 

I was on it after my primary and was told I could stop( after 7 years, about 6 years ago) but the bc came back a couple of years after I stopped. Could be a good idea just to ask your onc the reason for you stopping Letro?

have a chat with your bcn if you arent currently seeing your onc. She will be able to advise you.

good luck with that, Hugs,

 

Moijan💚💚💚

Community Champion

Re: How long has letrozole worked for you ?

Hi Meat

I just wanted to mention that this thread is in the secondaries part of the forum which means for us (with mets) that we are actually asking how long has Letrozole kept our mets (metastases) stable and/or reduced them rather than whether letrozole has kept BC from reoccurring. We will all understand your fears about what happens after you stop taking letrozole for treatment of primary BC and maybe there is a thread in the main section of the forum which also deals with those fears from other ladies in a similar position to you. However our fear is that when letrozole stops working for us it means we have to change to a different type of treatment to keep our mets at bay which is why this thread might not be the right one to attract enough replies to your questions.  I actually don't know the next option for you as the timescales for how long to remain on a hormone treatment have changed since I had my primary back in 2003 but, again, you may get more knowledgeable replies in the main part of the forum.

Good luck though and hopefully you will still get a few ladies helping you with your questions.

Nicky

Member

Re: How long has letrozole worked for you ?

I have been taking Letrozole for five years now, prior to that I was on Tamoxifen for five years. Breast op, chemo and radio therapy before that. Diagnosed in 2006. 

Tamoxifen caused bleeding from uterus, but Oncologist wanted me to remain on It because of high risk of cancer reoccurring.

 

i am due to stop taking the Letrozolevat the end of this month, but I am scared to do so.  I believe it has helped to keep me alive, and cancer free, all these years. Byes, my joints ache, yes, I've gained weight around the tummy, but both are small prices to pay.

 

what can I do? Are there negative side effects for remaining on Letrozole? 

 

Thank you. 

Member

Re: How long has letrozole worked for you ?

Lynn
Thanks so much for posting ..it makes us letrozole ladies feel a bit more confident in the tiny pill we pop everyday .
Positive thinking xxxxx
Member

Re: How long has letrozole worked for you ?

Hi if anyone is reading.
I first responded on this thread in June 2013 to say that I had been on LETTOZOLE for 7 months and that it seemed to be doing it's job.

Just thought I would post again as I have now been on LETROZOLE for just over four years and it is still keeping me stable.

I have not had any more treatments. My joints ache, and I have put on weight around my middle....letrozole or  comfort eating???

Every time I tell anyone how well LETROZOLE is working I touch wood and say a little prayer so as not to tempt fate.

Hope anyone just starting out on Letrozole can get some inspiration from this 😀

Xx

Community Champion

Re: How long has letrozole worked for you ?

Hi Maria

The post from cmccallum05 was from 2015 so you may not get a response as I think she no longer uses the forum.  Apologies to cmccallum05 if you do, its just I havent seen anything recently.

Nicky x

Member

Re: How long has letrozole worked for you ?

how's your mom cmccallum05 ?. How are you?

Member

Re: How long has letrozole worked for you ?

rely on family for love, not doctors. Their science usually comes first, and they work hard.
Sister has bone mets after 8 years of being on tamoxifen. They might remove ovaries to put her on femara.
I stay strong by crying a lot....and spending a lot of time with my sister to the point of not working for extended periods just to be with her talking about life not her illness.
My sister will start taking medicinal cannabis for the pain soon. Will report.