Hi. I got my lastest scan results yesterday and Tamaxofen has stopped working. I was expecting it. No spread but my largest nodule in my lung has gone from 4mm to 6mm so I think we have found it quickly that it has stopped working. They have put me on Letrozole. I have had a look at past threads but can’t see much about it. Can anyone advise on Letrozole? How long have people been on it and what are the SE like. Thanks X
Hi gigli, I’ve been on Letrozole for a couple of months. This is a chemo break so I’m hoping it will work for a while. It causes stiffness in me rather than aches or pains but that’s about it, no other side effects. Hope it works well for you! X
I have been on Letrozole for over 2 and a half years, it is the only treatment that I have had, and it has kept me stable for that period. I was diagnosed primary Oct 2012 and secondaries, in bones, skin and peritoneal area about seven weeks later.
My TMs over that period dropped from 418 to 40ish, they vary slightly now but only a bit, sometimes going up by 4 or 5 sometimes going down by the same amount.
Side effects for me are achey joints, and also UTIs and/ or vaginal dryness - but I
am post menopausal which can also cause those symptoms… I also have had interstitial cystitus for years …it is not there all of the time I have ‘flare ups’ every so often. I have a non- oestrogen cream for that problem and just paracetamol and naproxen for the joint pain.
Letrozole is obviously working for me. My scans have shown no further progression and some healing in my bone mets. The ‘shadows’ in my peritoneal area are ‘no longer showing’ and the lesion under my breast where they found BC cells was removed and has gone. A small spot on my mastectomy scar is monitored, but it has not changed since my op. over 2 years ago.
Hope you have as much success with Letrozole as I have…
Thank you for your comments. Two and half years is encouraging. I also hope it works for me and keeps me going along time. X
I was only letrozole for 4 years!! From initial diagnosis of secondaries ( multiple lung mets in both lungs) from the start! In that time every scan showed an improvement until eventually after about 2.5 years I was NED. That lasted for about 1.5 years until progression. Virtually no SE, a few aches and pains but life was totally normal!
Good luck with it
Hi ladies, pleased to hear so many of you are having succes with hormone treatments. Unfortunately i havent been so lucky. I changed from arimidex to aromasin after 6 weeks due to aches and pains etc and was on that for 2 years before i developed skin mets. Went straight on to letroole which didnt work at all…after being told i was in remision following docetxol and capecitbine my mets were back and spreading ithin 6 weeks. I was interested to read bout the diferent brnds and the fact that you can go back to ones you have had before. Maybe if i was ab;e to try genuine arimidex again?? i seem to have so few options available to me now. I’m currently on eribulin but not convinced even thats working.So scary. Any advice greatfully received. xx
Nicky, what good advice, i will note the brand names from now on! My first month on Letrazole was painful (that packet came from the marsden), second month has been a breeze, I’m feeling great (that packet is different, this one is from my local pharmacy by, Cipla). Of course it could be that I’ve just settled into the Letrazole, instructions say SEs should wear off. Unf cancer markers continue to increase, but Onc says it takes at least 3months to start working. Fingers crossed.
Thanks ladies for sharing your experiences x