@Susanmanchester I’m am really pleased that you have had such a positive experience of the Letrozole and it’s great that you want to share your experience. It’s really important that we have a balance of opinions and that people feel able to share their experience without judgement.
I have been on Letrzole for over 10 months with terrible side effects and have tried various other medication to counteract them. I want to share this with others in a positive way to say there are things out there to try and how they have affected me. I had two cancers at the same time and want to do everything I can to stop it coming back and staying on Letrozole. But if a time comes when the side effects out weigh my quality of life I will have to consider my Predict score and whether to continue. This is a very personal and individual choice.
I saw a doctor on the TV the other day talking about restless legs and suggested people have their iron levels tested. The NICE guidelines are much higher if you have restless legs and taking a supplement can really benefit.
Obviously having a bc diagnosis we do need to check with medical professionals before just taking supplements. So maybe try to get a blood test via your GP. It may help.
@naughty_boob you’re right about balance of opinion, and about it being a very personal choice.
I know that grief is affecting how I’m dealing with things right now, and my thoughts about the future. I am sure every one of us struggles with the changes that cancer brings, I just wish it could be ‘done with’, rather being there every day.
I have a good friend who is terminal (not from BC), and she reminds me just to live, to enjoy the moments. I’m trying, and hoping things improve with time. Xx
I’m on Letrozole now for 10months (will be for 10yrs too) and I’m 47.
However, I did try it and come off it, and try others eg tamoxifen….I had a central lumpectomy (nipple came off too), and 21 lymph nodes out & 20 radiotherapy sessions. I have the zoladex monthly injection too.
I learnt that Letrozole was best for me & came off blood pressure medication too.
I have to have a certain brand - Accord; not any others as I get worse & different, more symptoms with other brands - So check the brand of it!
I have two cancers too so definitely taking to reduce as much as possible any of it coming back!
Hot flushes& night sweats worst side affects but do take oxybutin which does help 90% of the time…
I’m physio for nerve damage on right shoulder/armpit/arms from the lymph nodes removal & still 14 months on from surgery! I’ve also had proper face to face desk assessment at home - have a different keyboard to normal that helps.
I get numb/stiff fingers & toes and worst in colder weather….still trying to find best solution for this (as without Letrozole I don’t have this problem).
Thanks for sharing this. I’ve been on Oxybutynin for 2 1/2 weeks but no relief yet! Told could be 4-6 weeks. So pleased it’s working for you. I also have Accord it’s the worst of a bunch. Have been considering asking for original brand Femara but it’s so expensive compared to generic brands so not sure if GP will do this.
It’s interesting you said about your nerves issues 14 months post surgery, I’m now 17 months post surgery and been told I have cording aswell as ongoing nerve issue in my neck. I kept pushing that I was in pain and found exercises so uncomfortable even with pain medication. A lovely locum Physio saw me and did a full on check of the naughty boobs, armpit, arms and chest wall ( which is also painful) and she found the cording. I’d only had 2 lymph nodes removed for biopsy so was told cording wasn’t an issue!
I have been on statins since before my BC. There’s a family history of it. For about 7 years my good cholesterol ratio put my risk score in the heathly range, but it was creeping up as I became older. So when I was 60 my doctor recommend I start taking statins. I wasn’t looking forward to it but I’ve had no side effects at all. It’s not changed in the 3 years I’ve been on Anastrazole.
Hi
I’ve read all the posts before saying anything. I’m 70, was 69 when diagnosed with BC. Reason for age is both prognosis, progression of cancer with age, & fact well past menopause. On that last subject I was a “lucky one”. At the time HRT was NOT recommended due to BC risk, so u went solo. Main impact was very, very, heavy periods. I mean changing pads & tampons every 1.5 hrs in days 2&3; financial hit like babies nappies . BUT - no sleep issues, very occasional hot flush (& only at night), etc etc. Only other was had to keep frustration & anger under control. Lots of counting to 10 & time outs. I mention this ‘cos I took to Letrozole like a duck to water. No side effects. Was waiting to suffer a menopause! My (non-scientific) explanation is that my body is an ER desert, so it’s almost like a prophylactic. I’m staying on it for prob 7-10 yrs. I had some muscular/joint issues but all these have resolved since all chemo treatment finished. I’m 6 months post last chemo & the final side effect (fragile finger nails) gone. They are now 3mm without crack/split/break etc. I posted cos I think it’s important to say if it’s all OK. I don’t know the real stats on numbers with side effects & how impactful. The natural reaction is to reach out when there are problems. We don’t post - I’m on Letrozole (or *****) & life is good. But the reality is we don’t need help with “life is good”, but we do need help/pick me up with “this isn’t going well”. So from a lady that is not impacted, but eternally grateful for that, just keep on posting girls. We are are here to listen, offer tried solutions, & a shoulder & love from the rest of us. Oh & just maybe with time some crazy tolerance sets in & the nasties diminish
Thank you for posting a more positive review. The downside to a forum is that the majority of users start a thread because they have a problem or concern, and looking for help and support. Myself included. A lot of feedback is often from people who have also had a bad experience and want to offer advice. Put together it makes a lot of negative reading. I am guilty of that.
I’ve been on tamoxifen for 2 months, but will be changing Letrozole in the next couple of months due to change of plan. One of the common issues I’ve read about with these drugs are the “menopause” symptoms. It’s early days for me but no serious concerns yet…
But being 50, drugs or no drugs, I would have experienced the “menopause” part sooner or later. So I don’t really appreciate things like “hot flushes” being added to the Tamoxifen or Letrozole list of horrors.
I don’t doubt that some suffer more than others and for the ladies post menopause, im sure they don’t enjoy reliving the experience. I am also sympathetic to those who are suffering from more serious, long term effects.
I think it’s easy to forget when reading some feeds, that not everyone will encounter those problems or to the severity mentioned. So personally, more positive feedback from everyone (myself included ) !
. BUT - no sleep issues, very occasional hot flush (& only at night), etc etc. Only other was had to keep frustration & anger under control. Lots of counting to 10 & time outs. I mention this ‘cos I took to Letrozole like a duck to water. No side effects. Was waiting to suffer a menopause! My (non-scientific) explanation is that my body is an ER desert, so it’s almost like a prophylactic. I’m staying on it for prob 7-10 yrs. I had some muscular/joint issues but all these have resolved since all chemo treatment finished. I’m 6 months post last chemo & the final side effect (fragile finger nails) gone. They are now 3mm without crack/split/break etc. I posted cos I think it’s important to say if it’s all OK. I don’t know the real stats on numbers with side effects & how impactful. The natural reaction is to reach out when there are problems. We don’t post - I’m on Letrozole (or *****) & life is good. But the reality is we don’t need help with “life is good”, but we do need help/pick me up with “this isn’t going well”. So from a lady that is not impacted, but eternally grateful for that, just keep on posting girls. We are are here to listen, offer tried solutions, & a shoulder & love from the rest of us. Oh & just maybe with time some crazy tolerance sets in & the nasties diminish 
) !