thank you for the predict tool link...xx
i just ran myself self through it and it said..2.7 alive after five years
fortunately I'm now 17 years post initial diagnosis - is that a miracle? Obviously I'm glad to be here...but I do wonder about the validity of where they get their stats.....
just thought I'd feel that back for any poor souls who got a bit of a shock.
Hi wasnt well at all taking Letrozole.got very low in mood weepy and memory problems and confusion and fatigue. was struggling to cope with my job. Now cameoff Letrozole getting a lot better than I was and now going to try Exemestane.Fingers crossed this one is better for me . If not will than tryTomoxafen.Its trial and error ..xx
what a wonderful reply...just the things I would also endorse xx
these drugs do often, unfortunately have side effects.,,.it means having to weigh up and balance with other aspects...I'm now on one which give me sporadic side effects, but I will persevere because I realise that options for us are not necessarily infinite......
good luck with everything and as Pip says check with your onc before maki g a decision xx
Hi Snowdrop. After 5 years on Tamoxifen, I was then prescribed Letrozole, which was ok at first, but increasingly I found worsening joint pain, tiredness and flu-like symptoms. I decided to come off the Letrozole, figuring that I wanted some quality of life. However, my oncologist then offered Exemestane, which suits me much better. (I also take Aromasin brand). It may be worth asking your oncologist if you can try this. Good luck!
Hi Snowdrop, yes do think very carefully.....I was on letro for around 7 years...they told me I could stop and then it came back in four years'! If you can shop around for different brands that might help, Novartis made the original and it is pretty expensive, but I had no side effects really on it. It does cost about £80 per month tho and the pharmacies go for the cheapest!
have a chat with your onc as bc is usually incurable when it returns, as are many cancers....best to discourage it from returning if you can.......good luck with things and let us know how you get on.
Hi dancing pip. I had horrendous side effects on letrozole. I was OK for the first 6/8 weeks then they set in. I was ready to give up hormone treatment completely due to such bad joints and a messed up head, I was crying buckets and felt suicidal. My breast nurse took me off of them for a rest for six weeks. She then put me on Exemestane. Absolutely brilliant. A few aches and pains, but only 1 out of ten compared to10 out of ten on letrozole. No mind problems, feel practically back to normal. They are expensive though which is probably why they try cheaper treatments first. I saw them advertised on the net for between £88- £167 per months supply. I am on the aromisan brand by Pfizer. Been on them six weeks now. Think and hope I’m sorted now.
best wishes xx
I know just how debilitating the side effects of Letrozole can be (I was 63 going on 93) but I still recommend that you really do your homework before just 'stopping'. Read everything you can on this site - there are many suggestions including changing brands or changing time of day when you take it and these seem to help people. Run your pathology through the Predict tool - http://www.predict.nhs.uk/predict_v2.0.html to give you more background to your situation and then, armed with that knowledge, discuss it with your oncologist before you make any decision. Also, take a friend with you who understands your situation/feelings so you have someone who is hearing what is said when you might miss something. Wishing you all the best and positive thoughts. Love Pip
I'm sorry to hear how you're feeling and how difficult the side effects have been for you.
Some of our Someone Like Me volunteers have similarly changed their hormone treatments because of the side effects. If you'd like to speak to someone who understands, do feel free to get in touch with us through this link and we can find you a volunteer to speak to.
Emily at Breast Cancer Care
I started with Anastrozole originally in Nov 2015 but the joint aches were so bad I changed to letrozole in summer 2016. Now I feel like an old woman, joint aches dreadful, mobility slow and limited, in fact I have qualified for a blue badge I walk so poorly. I wasn't like this six months ago and I keep getting worse. I've gained weight, my cholesterol is increasing even though I am on statins already,my hair is thinning as if it's not bad enough after chemo, my shoulder and arm aches are bad even after physio and injections. I go to my gym 3 times a week and try to keep active, I'm doing my best but now I've stopped taking letrozole. I have an appointment with the practice pharmacist in two weeks to discuss but I really think I'm going to stop altogether. I can't live like this, I'm 66 not 76! Can't even do my own cleaning!
any thoughts anyone, risks of not taking anything against quality of life now?