Forum Discussion
Ctoo
6 years agoMember
Letrozole
Hello
I am about to start taking Letrozole and after reading the side effects I am concerned. I've come so far after chemo, mastectomy and radiation and now feeling really good and enjoying life. The last thing I want is to go back to feeling unwell again! What symptoms did you experience or are experiencing?
I am about to start taking Letrozole and after reading the side effects I am concerned. I've come so far after chemo, mastectomy and radiation and now feeling really good and enjoying life. The last thing I want is to go back to feeling unwell again! What symptoms did you experience or are experiencing?
23 Replies
- CtooMemberThank you. My GP gave the same advice.
- Brenda5MemberI actually did better on the Letrozole than I did on the Tamoxifen so go figure? I ended up going off it because of a heart defect I had developed way back during chemo and apparently my heart needs some hormones to combat the fault.
My eyesight improved on Letrozole. The hot flushes were not quite as bad on the Letrozole. I had a bone density test and my results were that my bones were 15% better than for a person of my age.
Everyone is different. Just give it a go. If its not for you then there are alternatives. - arpieMember@Temple - what is STFU (tho I have a fair idea of what the FU is! LOL)
Try not to 'over think' the whole thing. Don't use Dr Google - we have plenty of info on this site from those who are going thru it to help mitigate the side effects 'IF' you get them.
If you think your Onc isn't up to the job - you can look at changing to another one - but at least give them a go. As you haven't started AIs yet, you haven't got any side effects, so haven't had to interact with the Onc on that issue! Hopefully you won't!!
Take care & have a great Xmas/New Year xx - AfraserMemberMy AI contains lengthy written advice about side effects. The list is huge but as with chemo, no-one will get all of them. It indicates a range. My oncologist also discussed some of the most likely side effects, many of which I don’t have. He takes the ones I do have seriously, and we are monitoring effects. He can’t tell what he doesn’t know - research doesn’t indicate whether seven years is better than five only that ten is better than five. It’s something we work on together.
- RomlaMemberI too am troubled by your post @Temple . It would seem your medical support team has been disappointing. At the beginning of treatment I changed one of my oncologists as I did not feel comfortable - I guess I was lucky being a private patient I could choose my team.If you can maybe you should too.
Re Letrozole nobody starts hormone therapy lightly but we choose to do so as Er+ breast cancer in the hope that it prevents recurrence ie it’s the best shot we have post surgery/ chemo/radiotherapy - we are lucky in that our Triple negative sisters have no such option.
I do not defend Letrozole, it was the scariest part of my treatment for me esp given my pre existing osteoporosis but I’ve tried very hard to manage it’s side effects . I realise some find it very tough but many find it doable - I’ve been lucky to be in the latter.
Finally I think it’s important to try , garnering as much information as you can to try and find a pathway to manage side effects for the potential protective benefits. - arpieMemberDon't be terrified of AIs, @Temple - as @iserbrown and others have said - not everyone gets the side effects! With a bit of luck - that will be you and @Ctoo!
When you both DO start it, keep notes of any side effects so that you can discuss it with your Onc. Hopefully they will be a good one (some of them are!) and help with mitigating the side effects, or try a different one,
Putting off starting til after Xmas/New Year is probably not a bad idea anyway - it is unlikely to make any difference to your longterm treatment - but you should really let your Onc know. - iserbrownMemberI find your post extremely sad. Not everyone suffers badly and you maybe one of those.
Letrozole is just one of the AI group.
My medical team treats me with the utmost respect. I am sorry if yours is as you mentioned above.
Venting is a way of releasing frustration! - TempleMemberI think it’s interesting to note the range of side effects from aromatase inhibitors like Letrozol that can be from mild to life altering in a terrible way. I can’t believe how often people dismiss these side effects as if they are not much, despite a high incidence of sufferers and high drop out rate in taking these drugs. I am due to start an AI in the next couple of days and as someone who is not arthritic and doesn’t have any osteoporosis or joint or muscle pain, I take the likely addition of such problems into my life very seriously. I have breast cancer so I have to now be constantly grateful to the medical world, but I am not doing that shit.I am refusing to start so the experience doesn’t ruin Xmas and holidays and I have put commencing right off until Jan some time.
As best I can see you will be minimised if you raise the issue of side effects from aromotase inhibitors. The best you can do is to walk, eat rabbit food and/or STFU- this is the summary I have reached. NB: The other advice commonly given is to “talk to your doctor” which is also code for STFU.
I truly hope you are not badly affected and I hope I am not when I get round to taking it. There’s so little information by and for women about side effects so the only thing to do is to go ahead and not worry our overly emotional, side effect inventing pretty little female heads and hope it isn’t too terrible because doctor says so. Great isn’t it?I hope we all share our actual experiences, good and bad, with other women because I’m terrified The male body builders taking aromatase inhibitors have more information and discussion than we do! - RomlaMemberJust another thought.If you have difficulty with Letrozole and it doesn’t settle. Be aware that there are 8 (I think) different brands of Letrozole on the market in Australia. Whilst the drug itself is the same the fillers and coatings are not which may be causing problems for you so may be worth changing brands for a while.
I initially bought a brand from the local chemist which was fine but switched to one from Chemist King which was $12 less per packet.I used it for 3 months but found myself feeling quite low .I then tried another brand from Chemist Warehouse for the same price which agreed with me better which I have now used for 10 months .
Fillers and coatings is an often debated topic and from my own experience I would say there is some truth in people being sensitive to them. - RomlaMemberI had joint pain for about 6 months but found daily walking for an hour helped me walk thru it pretty well.I also participated in gentle exercise programs and at the suggestion of my oncologist took a daily Krill oil tablet ( stronger than fish oil they say) - no idea if it workedbut managed ok so still taking it.For me the walking was and is very important - it also helps lower stress and gives me thinking time away from other daily distractions.
The big issue is to protect bone density as Letrozole thins bones. It’s wise to have it checked before starting and keep it monitored.I was osteoporotic prior to breast cancer so was put on Prolia injections 6 monthly to counter bone thinning which I manage fine andhave the added benefit of reducing recurrence risk.
It also causes vaginal atrophy which makes Pap smears more uncomfortable and difficult to do.My oncologist agreed to oestrogen pessaries for 1 week prior my Pap smear. I think the latest research suggests oestrogen pessaries are safe to use regularly to counter vaginal atrophy for Er+ breast cancer patients on hormone therapy - but please check with your oncologist.
Finally Letrozole can cause a big increase in cholesterol- it doubled mine - so that needs to be monitored and maybe some dietary modifications/ statin tablets may be necessary.
Letrozole I think is doable but can be tough at the start - many can push thru this and continue. For those that can’t there are other hormone therapy tablets that may alleviate troubling side effects.Give it a go - track any side effects and report them to your oncologist who can help with alternatives.It’s worth a shot but be persistent as it can protect Er+ breast cancer patients from recurrence .