20-12-2018 09:33 AM
you have a primary cancer, has your cancer spread elsewhere and therefore you have secondary cancer?
Following my primary cancer I took Tamoxifen for 5 years and then Letrezole for 5 years. The cancer spread to my bones 16 years after my primary. So to answer your question it definitely kept me clear for 5 years.
If you are dealing with secondary cancer then many ladies can still get years out of Letrezole, the hormonal drugs can be very effective if you are estrogen positive.
Hope this helps, please ask more if not
20-12-2018 06:53 AM
03-04-2018 12:27 AM
20-12-2017 09:19 AM
''just a few words of encouragement here....whichever drug you are on now...you are doing your very best to fight this scourge and I want to express my admiration.
I was was told I could stop my letro and I did, and the bc came back....if I could have that time again...my choice would have been to stay on it.........
''you are all...whichever drug you happen to be on....following advice and that gives you an improved chance..because you know you are doing the best you can.- what more can you do?
try to avoid too much stress, too much sugar and too much alcohol..........and....after Xmas. Get back on track with the healthy options you want to be on.
love and hugs
12-12-2017 10:24 PM
10-12-2017 05:05 PM
Thank you Kay and Moijan! I have just had my results - they found 30mm of DCIS but cannot find my primary! The DCIS is er/pr neg so Letrozole would not have stopped it anyway!
Good luck with your treatments and thanks again for your time,
01-12-2017 04:14 PM
i have also been on exemastane and it did only work for 2 months I could not have it with the everolumiseb(spelt wrong) combo as I have had too many other treatments perhaps you could ask about the combo I think you could have had 1 chemo and 1 hormone to be eligible for it
also new tumours can grow when on treatments as they stop working that happened to me on arimadex after 18 months which was my first treatment with SBC
hope you get sorted
28-11-2017 08:24 PM
Hi Polly, what a shock for you. My initial cancer was missed in 2000...by the time it was diagnosed(by me) in 2001, the breast unit found an 8x7cm tumour and the op showed 12/13 lymph nodes.,....I do understand if you are feeling angry....it's a struggle to ensure all the NHS staff get things right!
hopefully you will feel much more settled soon x
27-11-2017 06:22 PM
Thanks for your reply - I think I remember you when I was first on the forum in 2007?!
I have not had too many side effects with Letrozole although struggled with loss of libido and dryness etc! My BP is on the low side. I suppose I will just have to see how it goes with Exestamane if indeed that is what they put me on.
26-11-2017 10:59 PM
I have been on exemestane for 2 years and been stable. As Carolyn says it does much the same as letrozole. I haven't had a CT scan for 2 years but have had a couple of bone scans, My onc said that he didn't want to do too many CT scans because of the radiation involved. I don't know how the radiation compares with bone scans which use radioactive dyes (you have to wee in a special toilet at the hospital). Best not to think too hard between scans, not easy I know.
26-11-2017 01:43 PM
26-11-2017 12:20 PM
What are TMs - does it stand for Tumour Markers? I don't think I have ever had these, although I do have bloods taken every 12 weeks. I am on Anastrozole and Denosumab and have been stable for about 2 years. I know that this could change any time. I haven't had a CT scan for 6 months so will query this at my next clinic appointment in 3 weeks' time. Is Letrozole similar to Anastrozole? I'm afraid I don't really know much about treatments.
26-11-2017 11:36 AM
26-11-2017 07:46 AM
Im only on exemestane. Ideally I should be on the combination of E/E but my onc prescribed me just the hormone tablet when I'd finished Eribulin as a stop gap before starting a trial which is what we had expected me to do. However it turns out I can't go on the expected trial as my disease is stable and you can only be accepted (well, on the one/s I would be eligible for) if your disease is progressing. From what I've read of the E/E combo you can't have it if you have already had exemestane on its own (and by that I mean NICE don't allow it) however I will ask at my next oncology appointment. I am hoping it will hold things stable for a while at least but will wait to see when I have my next scan. I don't get TMs done unfortunately which I know for a lot of ladies with SBC this shows an early warning of when a treatment isn't being as effective.
25-11-2017 02:09 PM
Hi Nicky I wonder if I might ask you a couple of questions.
I was on letrozole for a,most five years and it kept me stable. My TMs started to go up about six months ago, recently had a scan which showed subtle changes so they have put me on exemestane/everolimus combination. Is this what you are on now, or is it still just the one.
i had very few SEs with letrozole and am hoping that I can be lucky again with this combo.
25-11-2017 08:45 AM
No reason to apologise pollym, we're here to help when we can.
I have recently moved to exestamane having had letrozole a few years ago. I can't say I've noticed any difference in side effects so I hope the same happens for you. The only thing that I do notice whilst on any form of hormonal treatment is my blood pressure goes up so I keep an eye on that but otherwise nothing unusual to report.
23-11-2017 01:54 PM
Just an update to my previous post - My staging scans showed no spread to lungs, liver or bones.
However, following mastectomy and SNB last week for high grade DCIS micromets found in my lymph nodes.
This means I have managed to grow another invasive cancer whilst on Letrozole on the other side! Surgeon said to stop taking it as obviously not working for me. This is despite them not knowing whether the new cancer is ER+ or not! She reckons they may not even find my invasive cancer but as 80% of cancers are ER+ they will treat the new one as such if they don't find it and switch me to new medication - Exomestane - has anybody else been moved to this? I just wondered how it compared to Letrozole?
I am sorry to barge in the secondaries thread but you ladies here have better experience of switching hormone meds when they arent working than the ladies in the primary thread!
Take care everyone xxx
10-10-2017 09:12 PM