I guess that I feel like I have gone from a fit, healthy 55 year old to a decrepid 58 year old. Everything else that has gone on in the last 3 years (the Breast Ca is a second & unrelated cancer for me), I am really struggling with the medication letrozole. My oncologist has urged me to stay with it. We have changed from anastrazole to see if letrozole was a bit better tolerated, but no. The achey joints, the bone pain and the general skeletal feel of stiffness that doesn’t go away, is horrid. Getting out of the car, the bath, going up & downstairs, trying to get up off the floor from kneeling - aargh. Jiffling in bed, not sleeping… They say 5 years of this - I have done 7 months only so far and am hating it. I know all of the reasons to continue and I also know I’m not alone here. Do any others out there use a particularlys good painkiller that works? Anti-inflammatories have their own side-effects and prescription strength codeine/paracetomol helps a bit, but are not suitable for rolling up at work spaced out! I am not depressed, but certainly feel flat and frustrated that my life has changed so much. I realise my life before is unobtainable, but whilst I am normally positive about my recovery, the joint/bone situation is proving a struggle. I hope i haven’t moaned too much, I just needed to say these things in a forum where others may understand. Thanks!
What i did mean to ask was, has anyone here actually completed the 5 years on either anastrozole or letrozole? Thanks.
Hi Genorm
Welcome to the BCC discussion forums, you’ve come to the right place for some good, honest support from the many informed users of this site who I am sure will be along soon to offer their support.
In the meantime, could I suggest you give our helpline team here a ring, they’re here to support you through this. Calls are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2.
Take care,
Jo, Facilitator
Hi Genorm, sorry to hear you are feeling so bad. I am just past my five years my diagnosis was in June 2008. I had Lumpectomy back in three weeks later for Mastectomy, had chemo, rads, tamoxifen and now on anastrazole been on it for about two years. I am ok on this tablet I can’t say I don’t get any stiffness because I do, joints all over do get affected but for me it is doable. I know it affects people differently as it sounds like it has with you, hang on in there it does get easier. I am expecting to be discharged on my next appointment in September. It now seems like it all happened to someone else. But also I can remember the early days and how frightened I was being told I had stage 3, but I am getting on with my life now and you will too. Take care hoping for better days for you.
Hi Genorm. I was just like you. Started with Anastrozole and did manage over a year but it was really hard work. Then moved to Lestrozole, which I found even harder. Third time lucky? Exemestane. Still rubbish. Then I moved back to Anastrozole, because my onc. was insistent that I carry on with one of them. This time around it has been so much better and the side effects are minimal in comparison with when I started nearly 5 years ago. I’m glad I persevered, but know how tough it is 
xx
Hi Genorm I was on Letrozole for 6 months - now having neo-adjuvant Chemo with op probably in October-then rads and after that back on Letrozole for the “duration”. Despite all the SE’s of Chemo, the achyness has largely gone! I have other aches, but quite different. I’m not sure how much of this is due to: 1) having to give up caffeine (I found out I have Osteopenia) or 2)the steroids helping me get a grip on symptoms of Osteoarthritis in ankles knees and hips which I’ve had for a while, but I think Letrozole must have been affecting me worse than I thought. I read in one of these threads that some manufacturers’ Letrozole has fewer SE’s for some reason but I can’t find the post now. Worth asking your GP if he can ring the changes for you. Another tip I was given was to “stagger” the NSAID’s with Paracetamol. On a day when I have to do heavy physical work I take the NSAID’s after meals and the Paracetamol two hours later. This does help me get over the worst and makes me feel more in control of the pain. Another thing is I take more baths and really have a soak. Great and better than a shower for relieving pain!
Hi i had bulging discs in my back before my Bc diagnosis and take Diclofenac 75mg with paracetamol, I have been on Letrozole for 8 months now and now have pain in all of my joints, some days worse than others. For me i have had to make changes to cope with this and for me this works, it is not perfect but i am more aware of my limitations.
Hello,
Now into the middle of 4th year of Letrozole after 5 years of Tamoxifen, only 9 months to go!!
I have a different side effect to most ladies. 6 months after I started Letrozole started getting problem swith mouth, started off just dry, then started burning. Currently under hospital for Burning Mouth Sydrome which apparently 1 in 3 postmenopausal ladies suffer from, certainly aren’t any on this site that I know of. There is no cure, I am on low dose Nortriptyline, mouth washes etc, we have just about tried everything but mouth still feels sore.
The aches and pains started about a year ago and I did have a full body MRI in April which was clear. So now on cod liver oil and glucosamine tables daily which have helped.
Hazel
Hi Genorm am experiencing exactly the same feelings and pain as you and identify completely with your post. I have only been on Anastrazole since April but feel that it is by far having the biggest impact on my life since diagnosis. the radiologist told me recently that I may be experiencing more pain as I am tired post rads but some days it really gets me down. I have no answers really as I am trying to manage on a comobibaton of paracetamol and anti - inflammatories until I see my onc at the end of the month. Some other ladies on this site have suggested cortisone injections to help but I need to explore this further. Currently feeling totally achy as have a urinary tract infection on top of everything else so have kidney pain too! I hope you do find something that works for you and send cyber hugs in the meantime. I know we must think of the bigger cancer free picture but some days that feels harder than others!
Best effects for me with Exemestane and Tamoxifen. No reason not to try Tamoxifen if you can’t tolerate the AIs. I hate them all!
Hi
I’ve just finished 5 years on letrozole and have been prescribed another 5 years.
The first few months on the little tablets were hell, and I honestly didn’t see how I would manage 5 years. But the s/e did settle down. The aches and pains decreased to a level where after a few minutes up and about they eased. I put weight on, had some bone loss, memory loss, became more hairy but given the alternative, it was ok. I grew used to it.
When my 5 years was looming, I had mixed feelings. Whilst I would have loved to give up all medication and return to my former self (hopefully), I just wasn’t prepared to take the chance. Luckily my onc is heavily involved in research at the Christie, and when I went into see her prepared for a difference of opinion, I didn’t get it. She recommended that I do another 5 years. No, I’m not happy taking the tablets, but it beats the alternative.
Hi, I am 4 1/2 years into tablets, first I was given tamoxifen which made me hot and felt like I was wearing concrete boots. I couldn’t walk downstairs when i first woke as me feet would just snap and crack and not bend and all my joint become very ancient as well as foot trouble when walking. I was warned letrozole was likely to be worse but it hasn’t been. I couldn’t shift any weight or the tamoxifen spare tyre effect but as soon as I stopped tamoxifen I was able to lose weight. One onc told me not to bother to even try while on tamoxifen, he was right as I couldn’t. The strange thing is that I have no real effects from letrozole now as even the milder ones have either worn off or I don’t notice them any more. This could possibly be due to 2 things. Firstly I did a bit of research helped by my chemist and only have one brand of tablet each time. These have the same medical code as my original femara rather than some of the cheaper maufactured ones now available. In the past I found tamoxifen tablets varied a lot in side effects for me personally, according to the tablet coating. Secondly I made a big effort and lost 2 1/2 stones and it wasn’t really really hard on letrozole. Suddenly so many of my side effects disappeared that i though were from chemo, rads, tablets, etc. I can now easily get out of a squashy chair after sitting for a while, bounce out of bed, do shoe buckles up, no hot flushes, acid and reflux has gone too etc. I am feeling lucky reading some of your accounts but thought I would post as it might give someone a bit of hope or some ideas to follow. Good luck everyone love Lily x
I have been on Letrozole for just over six months and the side effects are rotten !!! My shoulders ache so badly and I’ve always got a pain in my upper arm (feels like nerve pain), if I lift my arm I can also feel an ache in my breast (affected side). I have to take them for 5 years and hope to God the s/e wear off soon. It really does get you down after a while, I feel about 180 !!
x
Hi Maltomlin,
I am coming up to 4 years on aromasin, and like all the ladies on here fell about 100, with stiff joints, I am interested to hear that your onc has prescribed a furter 5 years, (I think I have the same onc as you at chrisite), hope so,( I work there so I know the female onc) as even though they are hard to take , I know I will wobble if I dont have any safety net.
I will defo aske her next time if she would consider keeping me on mine
good luck keep well x
I am reading your thread with great interest - especially everyone’s comment about different brands. I was on Letrozole and coped with it for about 6 months - then the backache was so bad that I phoned my breastcare nurse for some advice. My surgeon let me come off of the tablets for a month and I felt brillliant! Of course, I have to have something and he put ,me on Anastrozole. The SE’s were so much better - I really felt like my old self again (well you know what I mean!) Three weeks ago I ran out of tablets and the local chemist had to order them in (must be the only person in my town who has them)! The brand name this time is ARIMIDEX - since taking them my “bad” breast has been extremely sore. Can’t lie on my side or front at all. Pain wakes me up every night at around 4 or 5. Have also developed funny red marks on breast which I thought may be due to the recent hot weather and a SE of RADS. Sore joints in fingers starting to come back first thing in morning. Phoned my breastcare nurse again and have an appt in 2 weeks for a quick check. But having read this post the timing with the change of brand could account for this new pain. Do you think this is possible? Has anyone else had the symptoms of the red marks?
Many thanks for any replies that may come from this
K M x
Hi
Just felt like joining in! I’m thinking about giving up anastrozole after 6 months - the hot flushes are horrendous (so sleep deprived) (also on zoladex), joint pain & swelling, also feeling mental affects (no memory). However, also coping with divorce (husband left after 21 years) and my mother died in March so not that great in other ways. Trying to build new relationship but worried that anastrozaole has affected libido… in a bit of a mess really and maybe just trying to blame the anastrozole. I read on some site that (basically & crudely) it is difficult to feel sexy while on anastrozole. Has anybody else dated successfully while on AIs? Sorry if this is really naff question!! I just want to ‘live’ while I have the chance…
Hugs
Maggy
Hi everyone. So interested to read all your posts. It helps to know Im not the only one. I have been on anastrozole for 6months now my legs are terrible first thing come down the stairs like an old lady!! My wrists have been so painful lately I have had to wear wrist supports to drive my thumbs ache really bad. Had a chat to my breast nurse last week and she got in touch today said the oncologist has told me to come off anastrozole and after a week a new prescription will be at my docs to collect its for exemestrane. I do hope this improves things, what with hot flushes stiff legs and aching wrists my side that I had the masectomy has also joined in today more painful than usual!! Fingers crossed still having to take calcium + vit d chews twice a day after scan showed bone thinning. Genorm I can identify with all what you are saying!!
Hi all,
Don’t want to speak too soon, but after 10 months of aches and pains, hands unbearably painful in the morning and horrendous pains in shoulders, over the last couple of weeks pains have really subsided. I had a cortisone injection in my shoulder and finger which had developed trigger finger due to Letrozole 3 weeks ago and this has helped enormously. So if anyone is thinking of giving up, (and id been there too) it may be worth carrying on to see if SE’s do improve. I’m sure I read somewhere that after a year or so your body can get used to them.
Gaynor xx
In year 4 of 5 years of Letrozole after 5 years of Tamoxifen. My aches and pains only started in year 3 but only another 8 months to go but I have had other SEs including Burning Mouth Syndrome which is very unpleasant.
I have been taking cod liver oil and also glucosamine tablets and they do help along with gentle exercise for the aches and pains.
At Christmas I decided to take a break from Letrozole but after having a full body MRI scan and worrying that the cancer may have come back I decided that it wasn’t worth the worry and am now back on it until next year.
I know how you all feel, have been on letrozole for over a year now. At first I was smug and thought I was getting away with se but these last three months or so have been a nightmare. I feel as those every muscle is being slowly affected, it was as though it was working up my body from my knees to my neck. If I do something “slightly” different you can guarantee two days later that joint will be in agony. It is giving me disturbed nights and having to take pain killers which I hate doing.Went for my check up Monday and tried to explain but somehow consultant didn’t really listen. Then he started dictating notes - including “tolerating letrozole” and I am going no, no. He did listen then and said “we can’t have this” (ie pain) so has given me a 6 week holiday and then I am to go back. He is talking then, if it is the letrozole, of putting me on tamoxifen. Having read up on that not sure it will be an improvement. The other problem is I am alendronic acid for ostepenia which has as its side effects joint pains. I just find it depressing, I was the one that sat on the floor at parties, joined in the grandkids games, suddenly I feel I am an “old lady” and that there is a consequence for every action. How did this happen? Does letrozole really improve your chances as I am not sure I can take this “quality of life”.