Hi all I am 64 and have breast cancer with bone mets. No op just letrozole for a year. Now have further progression and seeing onc in a couple of weeks to discuss what next. Anyone had this sort of thing? Worried this is the beginning of the end! Had a large 12cm tumor but shrunk to 3.5 cm now but they won’t take it out anyone else had this?
Thanks x
I’m 61, mets to lungs at initial diagnosis in sept 2010, letrozole got me to NED, scan in Sept 2014 found progression, 1 lung and 1 lesion in liver. Started everolimus and exemestane in October, which seems to be the favoured route at the mo. It’s supposed to very effective if it works but does has SE, my main one being mouth ulcers.
This drug is not approved by NICE but at the moment available thru the CDF, but is up for review on Dec 15th.
If your onc thinks this is suitable for you, i believe you would be able to stay on it even if the CDF remove it from their list.
Good luck Glo
Hi, I was diagnosed with bc and bone mets. Still have my primary even now. I have had various hormonal treatments and chemo since my diagnosis and I’m now about to enter my 12th year of living with this. Best Wishes.
Hi Edwina,
I’m another who still has primary breast tumour (bc/bone mets diagnosed 2006). I had letrozole for almost 3 years then it stopped working… then several other treatments (chemo and hormonals) one after the other… then letrozole again!! It did work for a few months 2nd time around. Now I’m on my 2nd time around with capecitabine (tablet chemo). I do have liver mets now, but most of the time they have been well controlled by treatments.
So I hope you will be reassured that there are other treatments. Oh and I’m just 65 
Hi,
Try not to worry although that’s difficult with our diagnosis. I was diagnosed Dec 2012 with primary bc and bone mets-given tamoxifen, denosumab, zoladex, no surgery. June 2014-local recurrence on sternum which was removed, , given herceptin as now Her2 positive, taken off tamoxifen and put on letrozole. Sep 2014, 2 small liver mets found, taken off letrozole and put on docetaxol chemo, still have primary tumour.
So plenty of alternative treatment out there-hoping to be sticking around for a while yet.
There’s another treatment for you I am sure.
Good luck, Helen x ps I am now 46.
thank you ladies for all your reassuring posts…i;m firly new to to the ‘mets’ club (skin) and have been very scared…you have all helped cheer me up. x
Please do not worry. I did! I was in Letrozole for a year before it stopped working, actually it was not even a year. That was in Janury 2014 when they discovered that it has stopped working. I have been on several diffierent treatments since then, even Chemo. I am still here and now on a hormone injection. I really understand the feeling that the help we receive is being ticked off, one by one, but there are so many treatments now. If there is any Secondary Cancer Care Group you can join near you join them. They are amazing and it you learn so much.
Hi just reading and what’s happened to you is happening to me now, lumpectom 2011 4 yrs tamoxifen stop working metatistic bc to sturnew collar bone lymp nodes breast went on letrozole June 2015 Jan 2016 2 new lumps appeared just getting sorted for 6 more chemo feeling really scared as last chemo may 1st 2015 but I read and I sound you I would be interested in chatting sending love x
Hello Moijan
Thank you for bringing this thread forward as I was dx in October 2015 with mets to hips, pelvis and femur and have been taking Letrozole for three months. I look at this tiny pill everyday and wonder how something so small could do so much. I take Adcal and now Denosumab injections monthly.
My oncologist is lovely and assures me that after 8 weeks it starts killing off the cancer cells and so the bone heal !!! As I have no medical knowledge at all …have to trust her !!!.
I know there are other options as I read the boards reguarly but secretly hope that this little pill will do what it says on the tin and kill the little cancer blighters that have set up home in my bones !!!
I did research Letrozole and it was formerly known as femera under licence and it seems similar to Tamoxifen/ Arimidex which I took for five years back in 2004/2009 with the primary breast cancer. After 11 years I was devasted to be dx with secondaries but like all the ladies on this board …take a day at a time and hope that new treatments will be brought into our lives as time goes by.
Carolyn xxxxxxxxxxx