I have recently turned 60 diagnosed at 58yr. Had lumpectomy and nodes clearance, had 2 affected, went onto have 5 days radio, now 3 years ibandronic acid and 10 years Letrozole.
Does anyone find they struggle to stand up of the sofa especially in the evening if sitting for too long, I sometimes have to roll off it to get up, not a good look.
I can’t walk down the stairs without twisting my body sort of sideways, no longer can I walk straight down stairs, was wondering if anyone else has/had this problem?
One of my ankles continually feels like it needs to click but won’t, my feet and heels hurt when walking, my husband says I now walk like Paddington.
My knee and hips hurt last year but that seems to have eased, my last five months prescription have all been accord, don’t know if that makes a difference, I try not to take any notice of what brand I get or I’ll think myself into side effects.
I take magnesium daily and was just wondering if anybody had similar side effects and any ideas of things that may help.
I’ve recently started back at gym classes as last year I mentally couldn’t face doing much at all.
If you’ve got this far thank you for sticking with me and reading, I’ve walked 7 miles today round London and that wasn’t too bad as long as I don’t stop and sit as so stiff when I get up again
I’ve been on Letrozole for two years, possibly 5 more to go.
I too had horrendous pain in hips, thighs, shoulders & neck. After many phone calls with breast unit and getting nowhere I finally managed to sort some MRI scans. These showed inflammation in muscles & tendons. I took results back to GP who did blood tests. Turns out I’ve got Polymyalgia Rheumatica, triggered by Letrozole (lack of oestrogen causes inflammation) I’m now on steroids but at least no longer in pain.
Hi @chillout365,
I’m in a similar position to u, age 57 but feel 87 now I’m 2 yrs into Letrozole!! It’s not fun but as I was able retire, I can manage. Going to the gym will help but it’s the lack of oestrogen thats making us so achy!! I haven’t bothered swapping brands either, as far as I’m concerned, it’s still the same drug that is mopping up any oestrogen around our bodies! Defo feel worse if I sit down too much and sitting on the loo is difficult so I got a toilet seat raiser (don’t really want “old lady” equipment in my house) but it’s so helpful!! I haven’t got stairs now and try to avoid them when I’m out and about as going up hurts my heavy aching legs and coming down hurts my knees!!
I’ve seen lots of posts regarding this so have a look for Letrozole side effects and then you’ll realise that you’re not alone in feeling like this!! X
I’m 57. Go to gym and yoga but sitting for any length of time and I’m like a 90 year old getting up .
My toes feel like claws in a morning .
All my lower body aches but it doesn’t stop me sleeping , luckily .
I work part time , so manage to keep moving .
Lack of oestrogen, sadly
Hi Chillout365
I know how you feel! I’ve been taking Letrozole for the last 15 months and yes the aching of bones side effect is the worse! I booked a consultation with my consultant and was told the alternative tablet options and their side effects - she was very thorough and understanding - and to be honest I think I’m just going to stick it out! I used to be able to walk 5/6 miles with the dogs but now manage 3 miles and then have a laydown and stretch for 20 minutes. I go to the gym but not as much - I am 65 but feel 85 so don’t want to stop being active! I am trying out a stretch class tomorrow as I find stretching really helps. Doesn’t help that I get plantar fasciitis and it has definitely got worse with Letrozole.
On a positive note I took Letrozole for 5 weeks prior to my surgery and my tumour shrunk from 21mm to 14mm in those 5 weeks!! It clearly does a job so for the sake of aches and pains I’m going to stick with it for now as the alternative of it returning is not an option. Good luck to everyone on it - there is actually an end in sight. Also I only take Sun Pharma brand as I know I am so used to that now, don’t know what anyone else thinks of Sun Pharma?
Like you I was told I could try other medication but
keep hearing Letrozole is the better so I’m sticking with it.
I did a stretch and tone class a couple of weeks ago and it was very good, I just haven’t had the time to go to that class again, but I intend to go regularly once I get a family visit out of the way.
I managed to walk 10 miles on Monday in total, but very slow and stiff by the end of the day.
I’ve had Sun and accord which is my current one, my aches seem slightly better on accord but the hot sweats are worse, I just accept what they give me each month and try not to think about it.
I don’t know how you work I’m not sure I could do that. Luckily I wasn’t working when I was diaognosed and I’ve no thoughts of going back unless I do some voluntary work.
I moved house in December to a different part of the country and I’m going to visit the local maggies
Centre and see what is happening there, I feel mentally I probably need to speak with people about it all, now I’m finally sorted after the move
Like you I’m not working and I wasn’t when I was diaognosed, fortunately I have a husband and I currently don’t have too.
I am wondering if I should be doing some voluntary work but I’m not sure I’m quite ready for it, I need something I can do when I feel up to it and just don’t want to commit to something and then not want to do it.
No I’ve not put on any weight since starting the steroids. It was one of my concerns, but to be honest I couldn’t cope with the pain anymore so was willing to take a chance.
Hi @chillout365,
I’m ok thanks. I’ve looked into voluntary work too but like you said, they will need you to commit and you’ll feel bad if you’re having bad day with side effects cos you’ll have to let him down.
I was so worried when I retired (I’m 57) that I would be bored but I’m never bored. I get up late (insomnia) then have a chilled morning. Then walk my dogs, do some house work, cooking etc, go to a gym class and before I know it, it’s teatime!! Sometimes I don’t sit down till 8pm. Just try to fill your days but on bad days, have a rest and enjoy it x
Wishing all our lovely ladies well, the stiffness and pain make us feel so low, I stopped taking Letrazole after 3.5 years with respect from my consultant, however my cancer returned after 3 years on the other side. Something to think about.
Wishing you, all lots of love together with health and happiness
Hi chillout365
Well done on the walk!! I’m hoping to increase my fitness but not so sure I could reach the 10 mile mark!! Phew!!
Thank you for letting me know about Accord as the hot sweats are unbearable for me as I suffered alot with them through the menopause and definitely don’t want them back in a vengeance. Hopefully it’s a case of getting used to them in time - better than the alternative!!
Good luck to you and keep up that fitness - well impressed!
xx
Hi @Tili
Thank you so much for being so honest about your recurrence. Knowing that helps me keep going-I’m trying not to moan about the side effects as I’ve just retired at 57 and that’s the only way I can cope!! Feel sorry for the younger ladies who have jobs and young children-most be so hard getting through every day feeling like an 80 yr old (think thats the best way to describe what’s Letrozole does to us)!
Take care and thanks again xxx
I was 57 when diagnosed. Like you I ache on anastrazole but I try to walk daily about 3 miles , I swim once a week and do aqua aerobics once a week… got to keep moving these days!! … being in AI’s there’s no time to go to work!!! I definitely feel 10 yrs older than I did and I’m only 15months in to 10 years of treatment but determined to keep on going. The alternative of the anxiety of not taking them is too great.
Hi @helen3
I completely agree!! I have 2 dogs so do a daily walk. Also, I do a Zumba class, weights class and a Pilates class every week!! If I’m having a bad day with fatigue and don’t move much, I find the aches and pains so much worse! My lower back has been playing up recently (think that might be connected to the Letrozole too). Does your back ache too? Been having shooting pains in my back and they are worse after being in bed or sitting down in the evening! X
Yes my back aches. I am an ex nurse so back ache goes with the territory but the AI’s are certainly not helping. I asked for a scan to doubly make sure it was only wear and tear and happily it didn’t show anything of concern. As much as we get thru treatment I hadn’t honestly expected to never get back to feeling like I was before all of this upheaval.
@helen3
Haha, I was a nurse too so felt exactly the same as you-my lower back pain is just from nursing!! But recently, I’m having sharp pains especially after resting. Maybe I’ll get to checked out too xx
It’s not fun but as I was able retire, I can manage. Going to the gym will help but it’s the lack of oestrogen thats making us so achy!! I haven’t bothered swapping brands either, as far as I’m concerned, it’s still the same drug that is mopping up any oestrogen around our bodies! Defo feel worse if I sit down too much and sitting on the loo is difficult so I got a toilet seat raiser (don’t really want “old lady” equipment in my house) but it’s so helpful!! I haven’t got stairs now and try to avoid them when I’m out and about as going up hurts my heavy aching legs and coming down hurts my knees!! 
