I am going to discuss this with my BCN next week, NHS Predict gives me a 3% improvement by taking letrozole, but it is turning me into an old woman (I’m a youngish, well was, 63 year old), been taking it since February 8/8 ER+. I think it has rid my body of oestrogen and now starting to affect my joints, mouth, skin etc and I have no energy. I would like to hear some opinions on this as I also seem to have brain fog and just need a bit of input from people, many thanks x
I had op 1/11 /18 currently radiotherapy. Have refused letrizole so far and said will consider when radiotherapy ends if I feel well ( I have high bp and heart stent) I was 69 in November and my predict score gives me 0% After 5yrs and 1% after 10yrs with letrizole. I have to consider carefully if I want to chance the side effects.
I started letrozole last April after finishing chemo last January. I was crippled with leg pain immediately but stuck with it til September when I got crippling pain in both shoulders and could barely move them. A bone scan showed arthritis in both shoulders. I stopped letrozole for s month and whilst there wasn’t much improvement in my shoulders, after 8 days I felt like a huge black cloud had been lifted off me. I discussed things with my once and I didn’t go back on it my cancer was 5/8 er+, it was caught early and when I had my masectomy there was no cancer left so I had a complete pathological response to chemo. The benefits of letrozole was minimal and for me quality of life is vital - I have 3 teenagers! My onc said I could try another AI if I wished but the thought filled me with dread. Discuss everything with your onc and BCN in order to make decision that you are comfortable with. Good luck ladies xx
Hi Cathy,
I have ben having the same on Letrozole i have been to see my onologist today and they have said come off them for 3 weeks and see if you feel better if so i have to go back and either try tsblets again or change to a different one
Really bad side effects i also got the predict score and decided not to have the iv injection for bones as it is only 2% difference so not worth the side effects
Hi Cathy
i too have been on ai for two years on and off. I took letrozole for about four months first before side effects set in. Bad back and knee pain and really severe depression and panic attacks. Cameoff for a while and got put on exemestane. OK for a few weeks then same side effects. Tried letrozole again after a break. No better. Had another break then tried exemestane again. Failed again. Got put on tamoxifen but had terrible hot flushes and developed blood clot in leg and then in lungs so now on blood thinners. Been off of ai since September but started anastrozole on Boxing Day. So far reasonablyOK. See my surgeon to see how I’m doing on them middle of feb. Hadsecond year mammogram Dec. All well. Had lumpectomy 3cm plus 14 lymph node removal only two had traces cancer. So in past two years since op have only taken ai for about justover a year all told. Fingers crossed anastrozole suit me OK. Good luck finding the one for you. xxx
Try a different brand of letrozole. I had 2/3 brands that made me very stiff and now have one that had no side effects. It is to do with the coating on them apparently. Worth a try.
Hi Cathy1
Did you end up stopping the letrozole? I have the same dilemma.