How long has letrozole worked for you ?

[cmccallum05]

Hi everyone,

Joining this thread not as someone on Letrozole. My mom was diagnosed 3 years ago with Breast Cancer with bone mets. An incurable disease. It has been a rollercoaster of a ride, to say the least. My mom has taken Letrozole for 3 successful years, while also receiving radiation for bone pain. Recently she was switched to Tamoxifen after more bone mets caused her pain. He onc who gave her the radiation said she can have bone mets, but if they are not causing her pain, there is no need to treat. Now that her pain started again, she was taken off Letrozole.

She now has pain in her right hip, but Xrays don't see anything sigifcant that would cause it. The Morphine she is on does not touch the pain, but Advil (anti-inflamatory) does. She doesn't feel it's the cancer, the docs are unsure. She is being sent for CT scan, bone scan, and MRI. More waiting. We met with a resident doc (as her normal doctor has been away for 3 months and didn't mention she would be away) and the resident said if Tamfoxien doesnt work then she will be switched to a Chemo drug "which is not easy to handle." The bedside manner of the resident was less than ideal (putting it nicely). She came into the room not really knowing about my mom's case. When originally diagnosed, they said there was no point in removing the breasts as it has spread. The resident said "why didn't you have surgery"? and kept asking what we planned on doing. I was so confused and scared. She made it sound like life was over for my mom. Maybe Im too emotionally to think clearly.

So my questions are:

1. Has anyone stopped taking Letrozole/Tamxifen and started Chemo? Success?

2. Are there options after Chemo?

3. Is it normal to see several different docs that don't know the patient?

4. Do you take pain killers for the pain? How much?

5. How do you all stay so strong? My mother is a trooper, me an emotional mess!

[Aubergine]

I was on letrazole from end of chemo. 

Diagnosed primary, grade 3 stage 3 July 2006, mastectomy, axillary clearance, 15/18 nodes affected (something like that), chemo E-CMF, then rads and letrazole (from mid-Feb 2007).

Last July (2013) arm started swelling and hurting in heat, saw gp then oncologist, scans 'as a precaution' showed bone mets in spine.

In retrospect think they'd been there a couple of years maybe.  I already had pain in the same place (had early retirement from work due to RSI, shoulder and spine), knew it had got worse but stupidly, despite my mum having had the same, did not connect.

Anyway, oncologist had already said would not stop the letrazole after 5 years, since no knowing what would happen.  On new diagnosis changed to exemestane.

So I'd say the letrazole probably worked for 4/5 years

[ponsmuir]

Thanks Vercors. My Onc told me my tumours 'chuck out' a lot of the right sort of protein to make the markers useful. I loved her technical terminology . Other people's don't. I am glad that this is the case with me as on this Iris trial she will see how I'm going after 6 weeks and put me on something else if needs be. Good I don't have to wait 3 months for a scan.

[vercors]

Thanks Ponsmuir, 

My onc explained that my tumour might not have the protein that they are using to monitor tumour markers. 

[ponsmuir]

Glad to hear you're stable on Letrozole, Vercors. Long may it continue. My Onc has found my tumour markers to be a very reliable way of finding out how I am doing. It just shows how individual we all are, and how what works for one person may not for another.

[vercors]

I have been in letrozole since December 2011. I have had no progression since and signs of healing in my bone mets. My onc does not look at mytumour markers as they have never increased even when my cancer was active.

[2catlady]

Hi,lovely ladies,thank you for your replies. Hopefully letrozole will kick in soon. I don't think I could copy with another treatment failing so soon. But I will like everyone else on here, you try to pick yourself up and get back the roller coaster .
Huge hugs and thank you,Helen xxxx

[amf80]

Hi Helen, 

I was diagnosed with primary and liver mets in April and have been on letrozole since beginning of August after chemo didn't work. I have never known my marker numbers other than normal or raised. My onc said letrozole takes about 8 weeks to work which is why I was offered chemo first. I still had a period for first 3 months! My markers were raised at end of chemo/beginning of letrozole but have since been 'normal'. Hope this helps

Annmarie xx

[Glo]

Was originally diagnosed in Aug 2010, as stage 4 from the onset.
Had a lumpectomy and then follow up scans which discovered multiple lung mets in both lungs.
Have been on letrozole ever since (virtually 3 1/2 years) and since Feb 2013 have been NED. Last scan was in Nov 2013 and again this was NED!! Next appt/scan wont be until around Aug. Long may it continue!!

[ponsmuir]

Helen,
It's good to hear you have an Onc appointment coming up soon. Letrozole has stopped being as effective for me after a year and I am being put on another treatment. It will be great to find out what treatment plans are available to you.

[2catlady]

Hi,lovely ladies,I was diagnosed in June primary and bone mets together. I was on tamoxifen for 6month but tumour markers went up by 100 every month so I was taken off that. I'm now on letrazole &zolodex and have been for 6 weeks. I'm having increased pain in mets and the lump in my breast has grown in the last two weeks to the stage I can see it poking out. Just got blood results today which has shown TM up again by 170! Is this normal,tumour flare or is this another treatment failing ? Really worried,I see onc next Monday,Helen x

[Guest user]

Hi girls. Tamoxifen did not work for me either as I developed a recurrence. After treatment for that , I was put on Arimidex, but as I had severe side effects, only took it for 2 years. Then developed secondaries in 2012. Been on Letrozole since April 2012. Normal side effects, weight gain, hair loss (quite a lot), night sweats, very achy joints etc. BUT the latest CT scan showed that the bone mets are stable, not spreading and look as though they are calcifying, i.e. not spread further through the bones. I am also on Denosumab. So this is good news all round, and despite the SE I am going to persevere with the Letrozole.

[Guest user]

Great news lynnq

[Lynnq]

I have been on LETROZOLE for seven months. I was Dx Oct 12. Lobular Ca in both breasts also bone mets and some peritoneal shadows.
i had a CT scan a couple of weeks ago and BCN rang with initial results since I do not have an Onc appt for about 4 weeks.
there has been -no new spread- The bone mets are either the same as before or smaller......and the peritoneal infiltration is -"almost completely resolved"

needless to say I am happy. Side effects are stiffness in my legs and feet..and other joints. ...especially after sitting for a while and when i get up in the morning. I try to walk every day and am considering taking joint supplements......I also have Zometa and Adcal......Onc said supplements wouldn't make any difference but I am still tempted to try them. No S E bad enough to make me consider stopping Letrozoe Even Tho Onc says there may be others we could try.

[Guest user]

Claire I hope so.

[ClaireD]

Sorry to hear you had a setback before the letrozole had time to kick in Gail, but if your onc is keeping you on it, presumably she is reasonably confident that you will benefit in time?

[Guest user]

Well I'm not quite abandoning letrozole but having built up fluid on right pleura and being admitted to hospital with breathing problems, onc thinks it might take too long to work so we agreed to go on weekly taxol. It's a pity as would have liked a good break from chemo. Unusually she is happy to combine the two.

[ClaireD]

Thanks Gail,
Hope it works for you too!
The s/es do lessen over time, but that doesn't mean the Letrozole has stopped working.
On the downside, I developed pitiyrasis which is a skin condition most commonly found in teenage boys...
Don't we just love hormones?!

[Guest user]

kitten-mad - hope you continue to feel better on Anastrozole.
Claire - good luck with the scans next month.

[ClaireD]

Hello All. Beryl - I was dx in 2006 and now have exactly the same mets as you. Am due for re-scans etc in June to check that the Letrozole is working. I was on Letrozole for 5 years, and it is only since I was advised to stop taking it that the mets have appeared. I was lucky in that the s/es were not too troublesome. So the good news is Letrole does work, and can do so for a long time! Here's hoping that it works second time around, and that it works as well for you all as it did foe me.

[kitten_mad]

I was on Letrozole for 6 months when I started to get really bad backache - I spoke to my surgeon and he has now put on Anastrozole which is not as strong. I have only been on it for 10 days and feel amazing, hopefully this will continue as the aches and pains of Letrozole were just getting worse.

[Guest user]

Thanks Milo, that's encouraging.

[Milo1]

Hope all goes well for you gail5, I have been on it a year and so far it is working 🙂

[Guest user]

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 weren't 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, don't seem to have had spectacular success with chemo, so onc thinks it's time to try a different approach.

[lucinda]

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 60's so had already had the hot flushes before.Letrozole did keep me stable for 18 months so the se's always seemed a small price to pay.Every treatment does have some se's...some worse than others and not everyone reats in the same way.rReally hope you get good results.

L xx

[Ann_W]

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

[Historygirl]

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

[Guest user]

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

[Guest user]

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 don't 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

[Lemongrove]

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]

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 don't worry that there may be a delay in finding out whether it's 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]

Hi Buffy
I've been on Letrozole now for only 5weeks and I am having terrible night sweats I didnt realise that this drug caused this.
I'm at 3 of 15 rads.so long way to go yet

[Buffy3]

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

[ponsmuir]

Good for you Glo. Thanks for posting - it gives us all hope.
Susan

[Glo]

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!

[Guest user]

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 isn't a common place for secondaries. I was put on Letrozole about 4 weeks ago and up to now have only suffered slightly 'hotter' hot flushes than normal.. I know it's 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 I'm not too good at navigating this site. So apologies if I've 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

[Milo1]

Thanks Lemongrove xx

[Lemongrove]

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 it's 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.

[ponsmuir]

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 it's 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 doesn't. 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

[Milo1]

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

[Emperortooco]

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 else's experience of Tamoxifen not holding out a lot of Hope really shot we,re all different I guess

[vercors]

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.

[Milo1]

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 🙂

[livlassie]

Iwas given Tamoxifen when first diagnosed but this was changed to Letrozole as soon as my bone mets were discovered shortly afterwards, so i don't know if the Tamoxofen would have worked. Been on Letrozole since August 2011 and all sans so far have showed the mets to be stable. I know it will stop working at some point but feeling ok though a bit sore sometimes. No new pains.

[Milo1]

Scan results were good, no change from last scan so feel very happy, going to have a bone scan in respect of ache/pain in ribs, feel like I can relax until april now when next one due 🙂 Letrozole obviously still doing its job

[bertie]

Yes Lucinda that's what I heard it should be taken with exmethesane, do hope you get funding for it. I am hoping to get it, if suitable, when Letrozole stops working for me, I am being treated at the Marsden and sometimes you get the chance to go on a trial so who knows! Always good news when new drugs are developed, gives us all hope eh!
Màrina xx

[lucinda]

marina you are right that the new drug evorolimus (afinitor) has been approved but it is not actually being funded by nice at the moment-I am waiting to see if my pct have agreed to fund it and will hopefully get the right decision soon.It is normally not taken alone but with another hormonal as the idea is it makes the hormonal perform better-I will take it alongeside exemestane.good news for those of us running out of choices.

L xx

[bertie]

Hi Milo,
Tamoxifen didn't work for me either, I have lung mets and have been on Letrozole for 3 and a half years and been stable since, I did have lots of aches and pains but they seem to have got better recently. There is also a new drug, which I think NICE approved recently, it is called Everolimus and is suppose to work when other hormone treatments fail, so another choice maybe for us all, hopefully, Do hope your results are good.
Love Marina x

[lucinda]

hi Milo
I was on letrozole for 2 1/2 years for bone mets, but it was found to have stopped working and I was recntly dx with liver mets.I have been put onto exestemene and am waiting for funding for afinitor.Arimadex already failed for me and chemo not really that successful.I think we do all respond differently to treatments and just have to hope they find one that works.Good luck with results.

L xx

[Milo1]

Thanks for all the replies ladies, got 3 monthly scan on monday, then results a week on wed so hoping for a no change , have felt quite tired and achy all over the festive season with a lot of discomfort under right ribs when I lay down, it is going to be a long 9 days waiting for my results 😞