Hi all,
I have been on letrozole since November. Initially the side effects were relatively manageable. Besides the obvious fatigue, there was increased bowel movements, dry eyes and mouth sores. The hospital prescribed a mouth wash which does help.
Then the arthritic pain kicked in and then the brain fog. Both the arthritic pain and the brain fog have intensified over the past 4 to 6 weeks. I started losing my car keys, I put the plastic crimpit case direct into the toaster and melted it (resulting In having to buy a new toaster), I have burnt numerous meals as I have forgotten food is in the oven, gone upstairs where I can't hear the buzzer, and only realised once the smell of burning made its way upstairs. I don't feel like myself anymore and I don't like myself for it.
But it is the arthritic pain that is the worst. I can't lift my arms up without terrible pain. I struggle to put tops, cardigans, coats on. I am in pain when I lie down on either side but can't sleep on my back.
So the BC nurse advised I stop taking the tablets for 2 weeks to see if the symptoms reduce. I am concerned that if it has taken 9 months for the side effects to build up how could stopping for such a short time give my body a chance to show whether symptoms reduce. I have also been worried as to whether stopping taking the tablets for a period of time gives the cancer an opening to jump back in. I know logically we wouldn't be advised by the BCN to stop taking it if there were any risk but psychologically I am struggling with this. As I know that, if the cancer comes back, I shall wonder if stopping taking the letrozole for those 2 weeks, was the reason and blame myself.
The pharmacist advised me against stopping and told me I should speak with the oncologist but getting an appointment is proving difficult. I shall try to speak with her secretary this week.
Have other people stopped taking letrozole? Did the symptoms reduce? Did you successfully change to another medication or did you persist with letrozole?
I recognise all your side effects and have them all! I think we have to ask ourselves what is most important to us, how old we are and risks.
1. Quality of life : I stopped taking this 20 days ago. My life is transformed. Effects of side effects 
are reducing. It will take time but I’m on the mend. I was an absolutely anxious wreck, terrified of everything, having panic attacks and someone said to me, have you looked at the side effects of Letrozole? Revelation. It was me!
2. Taking age and risks together, using the NHS predict tool, my chances of getting breast cancer again are very low. I was cancer free without chemo or radiotherapy after mastectomy. I’m more likely to die with cancer than of cancer (pretty much how men and testicular cancer can be described).
i don’t want to spend the rest of my being battered by a toxic drug when the risks are relatively low.
One of the things that concerns me is the blanket five-year prescription for Letrozole that I was given and is usual practice: hardly treating me individually. Seems to be too common and we are too scared to question …
I would encourage anyone who is suffering to seek help right away at the Breast Clinic.
