Hi Ladies,
I had am 3 monthly check this morning and was disapointed to hear that although my last scan showed no new growth I am now not suitable for liver resection as the spread through my right and left lobes is too much. I then asked my onc how long letrozole was likely to keep me stable, now I know it is not a question that can not really be answered so I should not have asked however I am quite upset about her reply which was as tomaxifan did not work for you, in her opinion letrozole will probabily only work for a short time, but try not to worry as there is lots of other things I will be able to move on to. So just thought that I would post on here to see how other liver secondaries ladies who have tried letrozole have got on and for how long.
Hi Milo1
While you’re waiting for other replies, I wondered whether you knew about the extra secondary live chat session we’re putting on this evening?
It is specifically on the theme of treatments and side effects, so perhaps there will be other people joining the chat who might be able to answer your question.
The session is on tonight, Wednesday 10 October, 8.30-9.30pm. If you’re new to live chat, just make sure you’re registered on the forum and then at 8.30pm log in here to chat breastcancercare.org.uk/community/chat
Best wishes
Leah
I was on letrozole for almost 3 years (my first treatment for bc - dx in 2006 - with bone mets) but unfortunately, multiple liver mets showed up. I’ve had various treatments since then, some hormonal, some chemo. Am now stable on capecitabine (Xeloda) since Jan.2011.
Thanks mrsblue, glad you are stable
mrsblue - I am so pleased you are stable but wonder why, if Xeloda is working to keep you stable, why it is not actually reducing the cancer as well. Have you asked your oncologist this question?
Hi Ann… I’ll answer your question, but reluctantly, as this thread was started by someone needing information about letrozole. My oncologists have explained that my liver disease (multiple mets) is tricky to monitor by CT scan alone, though my tumour markers and liver function tests are a good indicator of what’s going on. TMs have been decreasing since I started Xeloda, slowly but steadily, and only a slight decrease recently so, hopefully, the cancer is indeed reducing. Probably best described as “stable” for now.
Yes, sorry Milo1 for hijacking this thread. I should have put it on the Xeloda one. Thank you for your answer, though mrsblue and I am so pleased Xeloda is continuing to work for you.
I was on Letrozole for two years after primary diagnosis, although there was no evidence of spread at that time. Sadly, it did not stop secondaries developing.
Hello Milo,
I haven’t been on Letrozole and I don’t have liver mets (though I do have secondaries), but I just wanted you to know that I got nearly 5 years out of Anastrozole (another AI), after Tamoxifen had failed quite quickly for me. Do you know why your onc thinks you won’t get a good response from an AI? I hope you prove her wrong!
Thank you Ladies, Angelfalls, my liver mets was greatly reduced after FEC, I went straight on to Tam in the August then on my November scan found the cancer had grown and spread into 3 new areas so it had not done anything for me. I’m not sure why she thinks it will only work for a short while, I go in with a list of questions and seem to come out with a new list to be asked next time!!
Hi Milo
tamoxifen didn’t work for me at all but I got two and a half years out of Arimidex - similar to letrozole - so fingers crossed for you
lesley
Hi
Tamoxifen failed for me whilst being treated for my primary, it works completely differently from AI’s and is known to fail in a number of cases. I’m currently on Arimidex, another AI, and doing really well 4 years on from starting it (having had chemo as a first line approach). Speaking to my onc yesterday for my 6 monthly appointment he was discussing different receptors etc and AI’s work better in some cases than others, even herceptin doesn’t work in all cases - he even drew me a diagram to show why! There is this new drug, can’t even remember it’s name that works with AI’s once AI’s on their own have failed - but I’m not sure if it could be too new to be generally available. The other one he mentioned was Faslodex which he said was brilliant. Don’t know if this helps at all but, ,as you say Milo, go armed with lots of questions!
Nicky
This thread has given me some hope as Tamoxifen didn’t work for me at all. Onc mentioned letrozole when I was diagnosed with skin mets in June but put me on Xeloda instead. Am reasonably stable just now but think there might be slight growth again since having a couple of extra weeks off chemo and having dose reduced, so was hoping for an AI as next treatment. Last appt she reckoned I’m still stable enough to continue with Xeloda, but she sounded a bit negative about other hormonals since Tamoxifen had been so unsuccessful. Made me a bit depressed to think that a whole load of future treatments had suddenly been taken off the list, but hope she will reconsider.
HI
i was on arimicex for only 18months before it stopped working i was then given capcitebine but was allergic to it went on examastane whist got over the cap then had eprubicn and chlosphomide which did not work at all and now on tomoxofen being scanned end of jan 2013 and get results 25th feb
i think all cancer react differently to medication on each person i am er+ and her2neg( but i do not have it in my liver)
kay
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 
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
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
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
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
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
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. 