The below changes of King Theoden in Lord of the Rings depicts exactly how I felt whilst taking Anastrozole and after whilst on a 4 week break because of the pain in my hips and joints which were affecting my every day life. But what I hadn’t realised until now was how it was affecting my state of mind, forgetting things, brain fog, how I was constantly lacking energy, needing to sleep and feeling so tired all the time!
At the moment I am feeling revitalised and really don’t want to have to go back to taking these or any other AI tablets but I just wanted to see if anyone else had felt the same way?
Yup, I’m on Letrozole and have no aches and pains joint or muscle wise but have brain fog, low mood and general feeling of cognitive decline. Like you, I have taken breaks and it has cleared within a couple of weeks so I figure it is not doing permanent damage and will clear properly when I come to the end of my term (3 more years to go). I did take a break four weeks before a wedding in Germany last year so I was able to participate and enjoy it and another when welcoming friends from Germany, Chile and LA to London in the summer and, once again, was fine. So taking a six week break not to let other people down feels legitimate. I cannot shake, however, the need to go back on Letrozole, not to feels like playing dice with cancer and I’m not a gambler.
Thank you Tigress for replying! I’ve only been on Anastrozole for 8 months but it’s definitely affected me in a lot of ways. It had got to the point where I was struggling to walk up the stairs never mind to the local shop. I’ve just started to feel like my old self and I know the nurse will be calling me back within the next few days so I’m hoping she’ll have another option for me
I do sympathise with you @kerryb, it’s just awful to go through all of the treatment, following a shocking diagnosis in the first place, only to face feeling debilitating pain for 5-10 years. I do have first hand experience of the cognitive impairment and it is extremely unsettling. I totally get why women give this stuff up but when you speak to your nurse, explore every avenue before considering that nuclear option. Letrozole and Anastrazole are very similar, except Letrozole wipes out 97% of oestrogen and Anastrazole wipes out around 85% so best to concentrate on whether exemestane is a goer and if not, what could Tamoxifen do for you. I assume you’ve been through the standard drill of trying different brands to see if one is more favorable and experimenting with the times of day that you’re taking it?
Those oestrogen suppression figures are really interesting - can I ask where you’ve got them from?
I have changed from Letrozole to Anastrozole and am still struggling with severe stiffness, so would have to try Exemestane next if I can’t tolerate the side effects.
Hi @fran I am trying to find the paper which is from the National Institute of Health from 2021. I thought I’d bookmarked it on Safari but I can’t find it. I’ll keep looking. I tend to read a lot of academic papers, not that I understand everything but enough. In the overall scheme of things there is nothing much to choose between Anastrazole and Letrozole, it comes down to what your oncologist favours between the two. Bottom line is it is the depletion of oestrogen by whichever method chosen that causes the side effects rather than the drug per se. Good luck with the Exemestane trial, I know none of this is easy for many.
I tried Letrozole for several months and decided the quality of my life was so awful, I abandoned them. After a break I then tried Anastrozole and they were just as bad. So I gave them up completely. Ok, it heightens risk but I am 73 and I want to live not just limp through life as while on this medication I just wasn’t living. And, in my opinion, the amount of additional protection they give is not big enough to warrant wrecking my life.
I’m on Anastrozole. I do ache - a bit most of the time. But every now and again - OMG - I am aching all over and move like I’m 2oo years old. That only lasts about a week then back to mild aching.
Don’t start me on my (lack of) bladder control!
Having a 3-year post-treatment check-up with onc. consultant in 2 weeks. It will be mentioned! Don’t want to stop it, or even have a break as my 5yr outcome wasn’t brilliant so i don’t want to do anything to compromise my long-term chances.
Here goes…I had stage 1, grade 1, 6 mm hormone receptive tumor removed by lumpectomy on 2/22/2022. Clear margins and lymph nodes. Did 3 weeks of radiation with 4 boosts from mid April to mid May 2022. Started Letrozole in mid June for 4 months. No aches or pains but my brain felt like it was being squeezed in a vice and the brain fog was bad. Also developed neuropathy in my fingers. I went off it for 2 months and then tried Anastrazole. Three weeks in my head started to hurt again so I stopped. So far everything is good 2-1/2 years out. Hope and pray it stays that way. I told my oncologist that if the cancer came back, I’d rather it come back now when I am still young (66) and very strong. I have too many older friends that were on aromatase inhibitors for 5+ years and their cancer has come back 10 to 15 years later. Everyone is different, so do what is best for you.
Thank you all so much for replying and giving me your thoughts!
I’ve not had the discussion yet about other AI’s but I’m sure I will when the nurse calls me.
I’m only 51 and to feel like I was feeling old before my time doesn’t even begin to describe how I was feeling. I will definitely be discussing options with her. I was diagnosed with bilateral hormone receptor cancers in April last year and had lumpectomies in both breasts in the may, followed by 5 sessions of radiotherapy in August both were found on my first mammogram and I don’t want to risk it coming back but I do need to weigh up the options of that against quality of life, I think
Kerryb, I totally agree. I have been on Anastrozole for 3 years and hate it: I felt so depressed and cried most days and couldn’t be bothered to do anything or go anywhere. I wrote to my Oncologist and asked if 3 years would be enough as I can’t bear the thought of another 7 years. He said that I would need to complete the full 10 years but, if I am finding Anastrozole difficult he could change me to Tamoxifen when I see him in November. I decided to stop taking Anastrozole a month ago to give my body a 2 month break before starting Tamoxifen (I haven’t told Oncologist) and I feel so much better. The pain in my bones has gone, my mood has lifted and I am more social. I still get occasional hot flushes but they are not so intense (they used to make my heart beat faster and I felt an overwhelming claustrophobia). Now that I have come off the Anastrozole I know for sure that I will never take it again. I will try the tamoxifen in November and see how it goes. Big hugs and kind wishes to you xx
Your description of king Lear is true for me too !
And it made me chuckle.
I’m now 4mths in on Anastrozole & continue seeing a herbalist whose helped since my treatment started Dec 23 and with all the aforementioned current side effects.
So: after diagnosis I changed my diet (predominantly going vegan,no sugar, no alcohol), lost a little weight and take some form of physical exercise daily, mainly yoga (sometimes just 10mins). I also take mushroom powders daily . I had a Stage 3 5cm cancer spread into lymph nodes; so surgery after chemo and then radiotherapy. I was told after surgery Ive had a complete pathological result (very lucky me). However I’m now struggling as you all are on AI’s, I’m just hoping my self help can continue to assist my body to repair. I recognise we all have different stories and different methods of dealing with our bodies, I just hope we can all get through one way or another and improvements in these debilitating drugs are coming sooner rather than later. Sending you all lots of positive energy and
Good luck in the changes and options you decide on.
Xx
I’m 64 and I’ve been on Letrazole for 6 months. I take it last thing at night and do have night sweats some nights. I was suffering sore joints when I woke up but since upgrading our mattress topper that has eased.
I notice others have mentioned head pain, I suffer with this, not headaches but skull pain!
I guess tiredness and feeling less motivated is common too.
I haven’t noticed brain fog but I give myself a brain workout every day with Wordle and other online word games.
I have found omega 3 good for stronger skin, nails and hair and a daily probiotic ( on my oncologist advice) Biokult has helped with bloating and digestive problems ( this may be caused by the Ibandronic Acid)
When people ask how I feel one year on I can honestly say I feel almost the same.
Hi @revali do you mean you feel the same as you did preBC? That’s excellent if you do. The majority of women seem to tolerate Letrozole reasonably well and, like you, take steps to ameliorate any SE that may present themselves. The thing with fatigue and cognitive issues seems to be to fight against them by doing counterintuitive things like exercise and mental puzzles when all you want to do is rest. I shall be 69 in two weeks and am celebrating my birthday with a group of friends at a Take That weekend in Malta so there should be exercise aplenty - if you call Mum-dancing exercise! Keep going with the Letrozole if you can, those of us in our 60s should have plenty of time ahead of us once it’s finished.
I’m very sorry to hear of your suffering. As everyone is different and with different diagnoses we can only offer advice based on our own experiences! First thing I did was find out my chances of recurrence based on my results after surgery. After radiotherapy which lessened my risk by 16% AIs lessened my risk by only 2% - ie from 4% to 2%. So they don’t eradicate risk for me, just help it by a 2 in a hundred chance. So I didn’t even start the wretched things! The oncologist said I’d be bound to have some side-effects from them and I’d already had one menopause thank you! (I was 68 on diagnosis) I lead an active life on a farm and have to pull my weight there. I consider all the risks of AIs on my body to be higher than their benefit. Time is precious at 70 - I have work to do, places to visit and stuff to learn and I’m truly grateful for every healthy active day!! If BC comes back there was an equal chance that it would have done so anyway, even taking an AI. Then I’ll have to deal with it again.
What I don’t understand is why almost every medic/nurse assumed I’d be taking AIs and I felt like I was almost ‘going against the grain’? The oncologist though, was great - he ran it all by me and was fine with my decision.
We have a strange relationship with risk…some people seem to have a zero risk tolerance (no such thing as no risks in life!!) but then some of those people feel it’s worth buying lottery tickets!?
(And why does risk sound so different when put differently?? - My oncologist pointed out that a 20% chance of recurrence means that 80 out of 100 women will undergo further precautionary treatment for absolutely no benefit!)
I’d advise to ask that you be allowed to be involved in the decisions made about your treatment, to be able to have meaningful discussions so that ultimately decisions made are yours - when you’ve weighed up the advice and risks. Not much to ask really, but sometimes apparently lacking when you read of people’s experiences.
I wish you the very best for the future❤️
