I saw onc the other day and as I have almost done 5yrs on tamoxifen, following a lumpetomy, mastectomy and chemo. I assumed she would say i do not need to take any further medication. However I was wrong and she recommended 2-5yrs on letrozole.
She then said, people who had tolerated tamoxifen well, often did not like the side effects of letrozole. Rather daunting!
Anyone gone down the same route, ie tamox then letrozole, it would be good to hear from you.
When i was Dx with all this I didnt think I would be here 5 yrs on, and after 2 yrs DX i view myself as cured. It was a set back to hear I would need letrozole. Sort of a reminder that’hey ho’ its still lurking!
Would value comments.
Ruth
Hello Ruth,
I am 2 years ahead of you, had 5 years of tamoxifen, got on well, no real side effects. Now been on Femara for 2 years, another 1 to go and counting the days!
Before I go any further I will add that I am taking a very mild dose of amitriptyline for the pain in my arm after having my nodes removed so this might not be helping with what I think is the side effects of Femara but I never had a problem while on Tamoxifen.
First 6 months of Femara okay then I started getting a really dry mouth,mouth sores at side of mouth,what looks like oral thrush in my mouth. My mouth also burns along with my tongue. My GP has tried antibiotics, creams etc. Had blood tests, nothing showed. A dry mouth is one of the side effects of Femara. 2 years down the line and getting worse along with the hot flushes. The only thing that helps are sucking ice cubes!
I honestly thought some of it was stress, I was in a job I hated, working long days and in January I gave in my notice just to see if a complete break from work would help. It might seem drastic but since my treatment ended 7 years I have worked full time and was finding it all too much but it hasn’t helped.
I see my Onc on Wednesday but I don’t really expect him to say much, I find that he doesn’t really want to know about the side effects of drugs. If he was to say that yes it is common with Femara I could then say well thats okay I will put up with it for another year but if he doesn’t want to know about it I feel like taking a break from it just to see if the problem clears up.
This is the only side effect I seem to have, a bit stiff but no real pain. I am due to have another bone density scan this year to check for Osteoporosis.
Please don’t be put off after reading the above, everyone is different and I always said that I would take everything I was offered and I do still feel the same.
Take Care
Hazel
Hi Ruth
I remember you from years ago - I think we were DX same time - December 2005?
I have the same dilemma as you. I have to come off Tamoxifen in June and I too thought that was it ( if it ever is!) . My onc then threw the 2.5 years on an AI at me. I wanted to cry.
Basically I have a 1% chance of recurrence per year on an AI and a 1.4% chance of recurrence if I take nothing. Not much difference. I cant bear to think of more crap and side effects and I already have osteopaenia which will be accelerated by AI’s. He wants me to take biphosonates if I go on AI but I read they make you feel really sick and I already have stomach issues!!
Part of me thinks for 0.4 % added risk per year sod it but then I think what if I am the 0.4? At the moment I am burying my head in the sand until June. I am SO fed up because I feel like they always move the goalposts and it just becomes a life sentence.
Let me know what you decide
Take Care
Alise x
I have recently started Femara after Tamoxifen and finding the side effects hard. According to my onc studies that came out this year have indicated that survival rate is increased if both drugs are given. I am not a risk taker and also think what if I am in the small proportion that would experience a recurrence?