Hi. I’ve just finished a year of cancer treatment - mastectomy, axillary clearance, chemo and radiotherapy (last one yesterday). I now have to decide whether to take Letrozole for 8 years. I’ve heard lots of stories about all of the awful side effects which have scared me, so I’m undecided. I just want to get back to some sort of “normality” and don’t want to suffer unbearably for the next 8 years.
I have osteoarthritis in my neck and osteopenia (have taken alendronic acid in the past and am still taking Adcal D3) along with general achy knees, back etc which is probably normal for my age - 70.
My question is this. Is anyone taking Letrozole and not having any problem with it all? If I am going to try it, I’d like to know that there is at least a chance of not having any of the awful side effects. Maybe that’s just not possible and everyone suffers to some extent? x
Hi @countrygirl1 the women who don’t get unbearable side effects on it don’t post here as the forum is really here for support and advice if one has an issue. For what it’s worth, I started Letrozole in October 2022 the day after my 67th birthday. In the first instance I got some vaginal dryness but that has gone away and a bit on ache in my right hand fingers. I’ve never had joint pain or hot flushes but then I didn’t experience hot flushes during menopause. I’m supposed to take it for five years. Has your oncologist gone through the Predict model with you? That indicates what percentage benefit endocrine treatment would give you. I completely understand that you’ve had enough after a year of challenging treatment but perhaps try it for a couple of months to see how you get on? No-one can force you to take it and, if you haven’t already signed the consent form, make sure you understand from your oncologist what the risk to you would be in rejecting it, before you sign the form. The statistic that gets bandied about is that 20% of women give it up, although it may be higher as some don’t admit to it, but that would suggest the majority do ok on it. Whatever you decide to do, good luck.
Hi country girl
Understand your worry it’s all so horrible, but I have been on Letrozole for 8 months now. Aside from a lot of hot flushes I don’t have any other issues with it. But do have to take Adcal as Letrozole can weaken bones.
Good morning, I have been taking Letrozole for 9 years.
I am 71 .
I cannot say it is problem free but you get used to it and I dont know how a ’ normal ’ 71 year old feels.
I would say Letrozole is probably to blame for my osteoporosis…I do take adcal and have had 3 years of zolendronic acid ( It wasnt too much of a problem , I preferred the infusions to the tablets).
I dont have any specific joint problems and do have a good head of hair!
So, all in all I am ok and have decided to complete the 10 years .
So , I would say give it a go…I do remember having very sore ankles a month or two after starting them and massive night sweats that lasted around 6 weeks…however these things passed so dont panic if such things happen as a lot of these side effects can be transient.
I have been on it for 3 months. My hot flushes got worse but are now improving again. My muscles maybe ache a bit more than they used to but I started weight training at the same time so probably that.
Otherwise I am beginning to feel better than I’ve done in years with menopause symptoms. Definitely give it a go and look to take care of yourself in many other ways if you can.
Im 59…been on it 4.5 years …a few aches and pains …nothing major…i get a uti aporox every 3 months ( never got them before) but fine after antibiotucs …my cholesterol is raised to 6 even with a chamge in diet ( was previously 4) …not great …but a known side effect for some …i wont stop taking tho…i was ER 7/8 …and have had primary BC 3 times …need to know ive done all i can …all we can do is make an informed choice based on our own particular risk
I have had letrozole for ten years without any bad side effects. A few hot flushes to start but otherwise fine.
I’d say definitely try it. Even if some side effects to start with persevere as they may well disappear.
Good luck and we’ll done so far
Hi Countrygirl1 and everyone else, I have been taking Letrozole for 5 years now, with another 5 years to go. I am now 73. I also had Zolodronic acid infusions every 6 months for 3 years, to help protect my bones. My oncologist also prescribed Vitamin D tablets which I take daily. ( My GP now prescribes them for me.)
When I first started Letrozole back in early September 2019 I had bad period like pains for about a week, which seemed to surprise my oncologist but then they went away completely. I also suffered with a really painful knee. - The joint being so bad I could hardly get upstairs. My oncologist, who I cannot fault said it was probably the Letrozole and took me off of it for about 6 weeks but sent me to a rheumatoidologist who did an MRI scan and saw nothing untoward. The conclusion was yes probably Letrozole.
I went back on the Letrozole of my own choosing as the pain had subsided. I think it was probably my body reacting to the hormonal changes. However over the years I have found my knee joints, although they no longer hurt for walking, are very painful when bending or going up and down stairs. How much of this is due to the Letrozole or my age I cannot say. I also get very tired but again that could be my age.
Luckily I have no other side effects and have decided that if this little pill is helping to stop my cancer returning then it is definitely worth taking for another 5 years even if my knee joints hurt me. Everyone seems to have different side effects and quality of life against pain etc.,is different for each one of us and of course it also depends on our age and circumstances. My personal opinion would be try Letrozole and if you have nasty side effects you can always ask your oncologist if you can try another drug. Take care everyone. I am thinking of all of you. Sunshine21
@countrygirl1 I’ve been on Letrozole for 2.5 years and it’s been hell. My knees are hurting so much that I can barely walk some days…no more long walks for me…my cholesterol increased a lot in only the 2 years I was taking it…my hot flushes are non stop and I can’t sleep during the night. I’ve tried different brands - currently taking Femara not much luck and my oncologist is suggesting maybe changing to Tamoxifen. So yeah it’s been really hard couple of years. I was only 43 when diagnosed and they put me in medically induced menopause. Also am having Zoledronic acid infusion - the last one in the autumn. I’ve got 5 more years of Letrozole and honesty am dreading it. I had 3 surgeries, 6 months of chemo, 15 RT and was on Abemaciclib for 2 years but honestly the joint pain is horrendous. I’ve developed carpal tunnel straight away in my wrists and the vaginal dryness is also a huge problem for me. My sex life is non existent because of this. So yeah I am seeing my oncologist after the summer and going to try Tamoxifen.
Good luck with whatever you decide.
I took Letrozole for 7 years after my primary cancer. I took it at bedtime and apart from some hot flushes I coped well. I think the benefits out weigh the side effects.
I’ve been taking letrozole for 9 years. I have vaginal atrophy and dryness, but that’s the only symptom. A pretty major one, but something I’ve reconciled with given the drug’s efficacy in keeping this cancer at bay.
We are all different and there is no way of predicting how your body will respond. Someone wisely said that the ‘problem’ free women don’t post on the forum and there will be lots of them.
Hi, I have been on letrozole for 2 yrs and 2 months now with no side effects, however I do get achy bones from time to time but nothing bad, I just take paracetamol. This could be due to my age and the general aging deterioration that comes with it. I would definitely give it a go as not everyone gets side effects and you might find you could be lucky, it’s yr choice I know x
Good Morning,
I have (a few days ago) come off Letrozole, not because I wanted to, but because they tell me I can’t have anymore. I’ve been on it for 7 years and am 66. it’s been my normal. I did and do still have aching legs, I am osteopenia and have osteoporosis in various bones. I do take various supplements to help with bone density issues. In the beginning I had muscle aches too. My hair is fine (I cold capped during chemo)
Is it crazy to say that I shall miss taking it? To me it has been my safety blanket and am used to the aches and know how to cope with them.
I can’t remember what my body was like before BC, so I will be trying to notice the changes now and to get used to a new Normal.
Knowing what I know now, if I were you I’d take it.
I wish you well.
Hi there. I"ve now been on Letrozole for about 5 months and it’s been quite manageable. I was still having hot flushes so they are just the same. I too have osteopenia and have been told I will only be on it for five years. Another tip - change the time you take the medication if it isnt suiting you. It’s made such a difference to take it late afternoon rather than in the morning - I dont feel like I’m going to fall asleep at 3 o’clock now
Sending you best wishes
Hi. Thank you everyone who’s taken the time to reply. It’s encouraging that some have very few bad side effects. As you say, those who don’t have a problem with Letrozole probably don’t usually post to say that. Many may have moved on and don’t check in with the forum now.
It’s given me a lot to think about and I may well try it to see how I go. Will also take good general care of myself with exercise and diet (and the occasional treat). Take care x
Amazing that you were able to tolerate Abemaciclib for 2 years and not Letrozole. I have not tolerated Anastrozole, Letrozole, Tamoxifen. I am currently managing on Raloxifene. I am supposed to start Abemaciclib.
Could you please tell me how that was for you?
Hi @Vissdoc I think I posted on other chat about Abemaciclib but hopefully you will be able to read my answer.
I did tolerate it yes but it wasn’t easy…though comparing it to Letrozole - first of all I had numerous breaks on Abemaciclib. I also had reduction on my dose twice. I had all possible side effects like diarrhea and extreme fatigue but the loperamide and afternoon naps were helping a lot. Whilst on Letrozole I am in constant pain like my bones are aching, my knees hurt like hell and the only solution is very strong painkillers like naproxen. I need to take omeprazole for my tummy before I take naproxen and I refused to do that so I’ve just been suffering in silence for the last 2.5 years…
Thank you for your reply. I am so sorry to hear that abemo wasn’t as bad as Letrozole! As I mentioned earlier I failed 2 aromatase inhibitors ( Anastrozole and Letrozole). My doctor took me off Tamoxifen as well for swelling and overwhelming fatigue like I experienced after radiation treatment. Perhaps your medical oncologist could try you on Raloxifene? I have been on it close to 2 months now and it’s so much more tolerable. I also take tart cherry tablets nightly and that helps with the joint pain tremendously. ( I had trigger finger and hand cramping and terrible carpel tunnel). I’m not sure that my doctor will put me on abemo even with reduced dosing as he is concerned that I couldn’t even tolerate the anti estrogen meds! Good luck to you. Hope you find a solution.
it’s all so horrible, but I have been on Letrozole for 8 months now. Aside from a lot of hot flushes I don’t have any other issues with it. But do have to take Adcal as Letrozole can weaken bones.