Member
Posts: 91
Registered: ‎16-01-2015

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
Posts: 1
Registered: ‎20-12-2018

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
Posts: 4
Registered: ‎19-05-2016

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
Posts: 3,294
Registered: ‎04-02-2016

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
Posts: 38
Registered: ‎14-02-2013

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
Posts: 3,294
Registered: ‎04-02-2016

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
Posts: 387
Registered: ‎01-05-2012

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
Posts: 205
Registered: ‎01-05-2012

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
Posts: 3,294
Registered: ‎04-02-2016

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
Posts: 387
Registered: ‎01-05-2012

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
Posts: 1,598
Registered: ‎01-05-2012

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

Community Champion
Posts: 8,536
Registered: ‎26-10-2015

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
Posts: 28
Registered: ‎13-05-2017

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

Community Champion
Posts: 8,536
Registered: ‎26-10-2015

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
Posts: 4,534
Registered: ‎01-05-2012

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
Posts: 624
Registered: ‎10-10-2012

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
Posts: 4,534
Registered: ‎01-05-2012

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
Posts: 387
Registered: ‎01-05-2012

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
Posts: 13
Registered: ‎10-10-2017

Re: How long has letrozole worked for you ?

You could be describing me sue x
Member
Posts: 13
Registered: ‎10-10-2017

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