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.
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.
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!
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.
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.
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.
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
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.
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.
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
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!
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.
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
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.
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