Hi Sally thanks for your reply .Another four years is a long time I agree,I've been told I'll be on Letrazole till 2029 that's 10 years in all,I was originally told it would be 8 years ,then suddenly when got information from my open access nurses it said I'd be on it till 2029 ten years .I did question it but was told that ,that was the case but I would be reviewed after 5 years by my oncologist ( who I've never met,just spoken on the phone )and it may change. It's a horrible thought to be on it that long,but like you so rightly say if it's going to stop cancer returning ( I know there are no guarantees) I will stay on It as long as I have to.x
Hi wassoscared I am sorry you are going through all this. I have resigned myself to joint pain after 1 year in Letrozole and then exemestane, both cause the pain and I don’t sleep well either. Wake up with hands I can hardly move and ankle pain, weirdly elbows. Moving around helps. I walk and garden but I just don’t have energy for Pilates etc, I wish I did.
four more years but I remind myself it is protective! Good luck everyone with this continuation of treatment, it’s a tough daily reminder but we are protected to a larger extent than if we didn’t take it. Hugs to all.
Hi Susan ,I too am suffering with joint and muscle pain,ecspecialy in my right shoulder my hands wrists and my feet. I am on Letrazole, and will be on it till 2029. I had lumpectomy and all lympth nodes were removed from under my right arm,as three lympth nodes contained cancer cells. I have lymphedema in my right arm,went to lymphedema clinic,and was measured for a compression sleeve,but after wearing it the first time it made my arm swell more,so I took it off.
I have terrible pain in my right thumb,which is locking and clicking at the joint where the thumb bends( should but gets stuck).I have to stretch and massage the base of the thumb and push on it for quite a while to get it unstuck and moving. I think its called trigger thumb( I googled it) and I have read about it on other cancer chat forums that it is a side effect of letrazole, as many ladies taking it developed the same problem. I do have atheritus in some joints,my hands knees, neck and I have had a small scaphoid bone removed from just below my right thumb a good few years ago ,plus I broke both my wrists at same time around 5 years ago right wrist in four places,which set 5mm out of alignment, so I don't think that helps lol.
The pain in my feet in the mornings is bad,ecspecialy in my left heel its hard to put my foot down and I hobble around but eventually that gets better as I move around. The trigger thumb eventually goes but returns at odd intervals sometimes, but its always back after sleeping ( well that's if I do,I only ever get a few hours sleep now) so it's tough at times,but im just so grateful that I found the cancer lump early as it was small ,stage 2 estrogen receptive,hence the letrazole. Im trying to stay positive and trying to stay on my letrazole brand Accord,I've been on that one for around 3 mths now,was tokd to give it 6 mths as it may settle down. I was on Cipia, but that was horrendous I couldn't move for the pain in every part of my body I had to take morphine so stopped that one and changed to Accord brand,which was great at first but not so great now but still a vast improvement than Cipia, ut just didn't agree with me at all.
I've been told different brands affect people differently as its the coating on the tablets that is different,and if after 6mths of taking Accord, if im no better or it gets worse to try the brand femarra if I can get it as its a lot more expensive than other brands.
I'm trying to eat more healthy, as I have put on lots of weight,as not as energetic as I used to be,and the lymphedema stops me doing as much as I'd like to,so it's a viscous circle and trying to find the right balance with everything at the moment. Sorry for the really long reply ,hope your feeling better than you was ive enrolled for the moving forward course so hopefully that will help.
I really struggled with joint pain for the first 5 - 6 months on goserelin and exemestane, and considered stopping but the Predict tool results convinced me to keep going.
I've found exercising every day or two really makes a difference, even if it's just for 20 minutes at a time, a walk around the block or moving while I'm waiting for the kettle or whatever. There are loads of options for HIIT or zumba or any kind of exercise class you like on YouTube, and I've managed to start running again.
On the one hand I'm glad that I've found a solution, but on the other it does mean planning a bit more to fit in exercise each day.
Thank you Sheila for your message. I am 64 and also don’t like this being put down to menopause, done all that! I feel reluctant to stop examestane, any risk of recurrence seems difficult after all we have shine through. But I will talk to my oncologist again and think about Pilates. My main exercise is walking and gardening, I try to do something each day but it’s all quite gentle! I must get the exercise bike out again!!
To everyone who has posted recently, I am really sorry to hear you are struggling. I also felt like I had aged 10 years in one, and was feeling so depressed, having been very active beforehand.
I do feel better for being off the letrozole, which I did on advice, BUT it took a few weeks for the joint aches and pains to go away - so JPet maybe worth persevering if that is what you want to do.
It's very difficult - I was told that letrozole has sound evidence behind it in reducing recurrence, and that made me stay on it. Then I was told that for me as an individual the benefits were tiny.
I don't think there is enough support for making theses kinds of decisions - impossible to do on your own as we're not (most of us) doctors, but we DO know how our own bodies feel. I used the Predict tool online and then went through this with my consultant.
As far as exercise that helped, I found Pilates really good. You can start gentle and build up, and my class teacher is very good at suggesting alternatives for things I find difficult. I try and do a little bit most days, before bed - helps me sleep too. I also swim - well more splash about in the sea tbh - and walk an elderly dog. So atm nothing very strenuous, but enough to keep moving - and I notice the difference if I miss more than a couple of days.
Anger is is quite cathartic too 🙂 I get so annoyed when everything is laid at the door of the menopause (I am 63) - and so what if that is what is causing symptoms, they are still symptoms that need to be taken seriously for goodness sake! Age-ism and misogyny are still much too common, and hard to challenge when you're feeling vulnerable.
I wish you all the best of luck in pursuing this and finding someone who will listen - they are out there.
If anyone finds a way to get relief from the joint & muscle pain please come back to this post and share please??
That’s a fair point, it’s worth asking the question and finding out if there are alternatives. Personally I have discussed my ongoing arthralgia on several occasions with both my oncologist and consultant breast surgeon. On every occasion I have been told it is caused by the medication which they strongly recommend in my case, but switching to letrozole had same effect. I raised the question again last week with my GP but didn’t get anywhere.
Definitely you are not alone!!
Aches are with me every day night and day. I try to stay active as much as possible and to get massages whenever I can, but there's only so much I can do and I still hope that time will improve the side effects.
In the last week I was lucky enough to not suffer much, which helped mentally too, but there are ups and downs.
I agree @SheilaJ and it's not just the NHS. I had private treatment and my oncologist is of no help at all. She blames the menopause for my aches and pains. I am unsure if that's correct but no one seems interested in addressing it or investigating it. In fact it got so bad that I have stopped taking the Letrozole now and, ironically, the aches have not stopped so I might as well start again. I am getting so fed up of this, yes I am grateful but equally fed up. I am living in the body of a 90 year old. I get that exercise works but I can barely walk so exercise is difficult.
I get that there is a balance to be struck and every case is different in terms of risks and benefits, but side effects should be taken very seriously if they are seriously affecting quality of life. It's not just about feeling grateful for having effective treatment for cancer (though I do) and that this should be enough, but recognising that there is an ongoing consultation to be had with patients to make sure they are getting what is best and works for them, and allows them to continue to enjoy day-to-day life as much as possible. Which may mean trial and error with a number of different drugs.
We have to be prepared to ask, I think. I didn't for months, just thought I had to thole it, and when I eventually did because I was feeling so desperate and depressed I was told I didn't need to have been on letrezole anyway. NHS is hard pressed atm, and as individuals we may not always get the follow up we need unless we question a little more. I wish I had asked sooner!
Sally 63 I’m with you totally. I wasn’t prepared for the arthralgia that follows treatment. I wake up in agony and go to bed in pain every single day and think this can’t be right? I’ve spoken to friends also on aromatase inhibitors who take it happily with no effects at all, so it’s only on this forum I’ve found out others who are also in pain and I know aim not alone.
I'm trying a couple of drops of CBD a day which isn't very much. You can take up to 15 drops a day. I can't swear it helps but it maybe relaxes me more so I sleep deeper.
What does help is the physio and I think that's partly being able to talk to someone who understands the pain.
Wishing you less pain and yes, keep swimming. It's the best exercise for your whole body.
Yes, my oncologist too told me that aromatase inhibitors have even more severe side effects than Tamoxifen.
I agree that staying active helps a lot. I can definitely tell that if I move I will feel the pain a bit less.
let's stay strong ladies!
Scrolling through the complete list of messages and responses, it seems to me that for the most part this is something we just have to put up with on either tamoxifen or aromatase inhibitors.
There doesn’t appear to be anything that really helps apart from maybe CBD but that seems complicated to obtain and use in appropriate dosage. I get quite depressed some mornings and the nights are awful, I never sleep properly even though I’m tired. I feel as though I must wear my family out so I try not to mention it too much. Cancer really does suck, I had no idea that we had 5-10 years of arthralgia to manage and it could continue after we stop the meds. Chemo was hard but at least there was an end in sight. But this isn’t cancer and therein lies some comfort and there are times during the day when the pain is less obvious,
warm greetings to you all, we just keep swimming and make the most of what we have ❤️
I was told by my oncologist that the aromatase inhibitors work better but have more side effects.
It’s all hard work, mentally and physically, and so I keep going to the gym. I really do think the more I move the better I feel.
It’s got to be worthwhile.
Thanks so much for your reply and no worries at all.
Their plan is Tamoxifen for 5 years (I'a already on year 2) and then switching to an aromatase inhibitor for other 5 years, but they already warned me that aromatase inhibitors such as Letrazole etc. are even worse 😞
I did have both chemo and radio.
I've got bearable days and days where the aches and leg cramps just drive me mental.
Let's hope things improve overtime!
I have been taking Omega 3 capsules for 3 years, I was diagnosed with breast cancer in January this year and started taking Letrozole in February. I had no side effects at all but started on Ibandronic acid in May, then it all started- I was taking these for 3 weeks and felt sick every day until lunch time, by the end of the first week knees, ribs, wrists neck all ached, I couldn’t peel a potato or get up the stairs but it disappeared after 3 days. The breast nurses are adamant it’s the Letrozole and not the Ibandronic acid that caused it but I had been on Letrozole for 3 months by then. On week 3 of the IA I had horrendous left eye inflammation which required steroids to reduce so I am off IA now awaiting IV Zolendronic acid. I’m not sure if the Omega 3 has had any influence at all whichever drug caused the joint pain but it’s gone.
Sorry it took so long to reply. I've only been taking Tamoxifen since October 2020. I'll be on it for 2.5 years and then I'll go onto an aromatase inhibitor for 2.5 years.
I'm still getting cramps in my legs and feet sometimes but not unbearable. I've been to the physiotherapist for the last few weeks as the radiotherapy has messed up the muscle under my breast which makes my arm hurt where it connects to my shoulder. This has helped enormously. I'm 65. Don't know if that's relevant.
Truthfully I just try to treat myself kindly. I've got a special cushion I can use under my armpit at night as my skin feels like it sticks together when I lie on the treated side.
Did you have radio or chemotherapy? You know the radiotherapy keeps working for at least a year/a year and a half. I'm surprised you'll be on Tamoxifen so long. I thought they only gave it for 5 years max.
Same with me, been on Anastrozole for 1.5 years and no let up in pain I though my body would start to get used to it. Can’t see any other posts on the effect years down the line?
Can I ask how long have you been taking Tamoxifen? Since it's been more than a year now for me and I can't see any improvement with aches, no matter what I try, I was wondering if there's anyone who noticed improvement over time? I can't imagine living like this for the next 9 years...
Hi, just to reiterate - I am not a medical expert and prescribed THC oil in conjunction with prescribed high strength CBD oil has helped my aches and pains as well as night sweats. I used Sapphire Medical Clinic but there are others available. THC oil does not have the same effect as smoking cannabis, it does not give you a 'high' - the clinic also stressed this in the appointments. I find it relaxes muscles and gives me a good night's sleep.
There are a number of articles and papers available to research on the Internet but I this has definitely helped me.
Hi. Interesting to read your posts.
I’m taking Tamoxifen and suffering at night with pain in my legs and shoulder. The cramps have pretty well stopped probably because I do a lot of exercise.
I liked your comment about CBD. I live in The Netherlands but have no idea which CBD’s are worth taking as I know some have very limited strength. Any ideas how I can make sure I’ve got an effective one? I’m not a smoker so don’t want to go doen that route.
I'm unsure whether they are in Stirling but you can book an appointment via their website Sapphire Medical Clinics. The CBD and THC shouldn't interfere with drugs but I'm no expert, I take Anastrazole. Yes it helps you sleep but takes a few weeks to help with the aches and pains and night sweats.
Hi that’s interesting that you mention Sapphire I joined a webinar this week to find out more. Is that the Stirling one? I was wondering if you are able to take alongside Zometa and Anastrozole I asked them the question but no answer.
How long have you taken it before it put pain away, or does it just help you sleep through your pain? Also are there any side effects?
Just following this chat. My aching became so terrible that I investigated CBD in depth. My thinking was that when my chemo course changed to the Paclitaxel I was in such agony that the only way I could think of getting relief was by taking some cannabis a friend had left some years ago after a BBQ. Also my father smoked cannabis to relieve his MS aches so I figured I'd try. It worked treat. So I checked with my GP for medical cannabis and despite what your read, it is not available on the NHS. There are a number of private clinics and I was willing to pay almost anything for some relief. I did further research and settled on a Sapphire Medical Clinics, paid for a consultation and then was prescribed CBD and THC oils. I have to say, they work a treat and I have not slept so soundly in years. Worth every penny. The cost is not good bad. When I looked into getting some THC oil from the Netherlands the minimum cost was £250. The initial consultation was about £200 and the prescription for both the CBD and THC is around £120. Prior to this, my Oncoligist also suggested taking a good break (8 weeks) from the Letrozole to see if that helped but, tbh, it made no difference at all so the aching must be a combination of the chemo, lack of oestrogen, menopause, sheer bloody mindedness! Happy to share more details of the medical THC if anyone needs it 😀
i had aches before treatment (now on exemestane ...was on letrozole which gave me the WORST bladder ache !) and a BC chum suggested CBD oil. She had been using it successfully.
I chose carefully and wishing 4 days my pains reduced dramatically. I stopped having to use paracetamol 4 times a day to cope. Rarely need pain relief at all. Nordic walking most days.
cannot praise the CBD enough.
I have no shares or financial gain from suggesting this.
just another option for some people to think about.
ps I did check with Breast specialist and GP before starting and they were happy for me to try.
Hi, I'm in the same situation. I've been on Tamoxifen for more than a year now (I started it straight after the end of my treatment) and I have the exact same aches in muscles, joints and bones that everyone else is experience unfortunately.
I tried Glucosamine as well as cod liver oil capsules and magnesium as suggested by my oncologist, but I didn't see any improvement. I also tried glucosamine for a few months but that didn't work either.
I found that taking hot baths with Epsom salts at night helps relaxing the muscles and that exercising helps too. I work out 5/6 days a week (no running though, as my knees are too sore) and that makes me feel good, but it's not that sport made my pain disappear.
I also have deep tissue massages every now and then and that definitely helps relaxing the muscles, but I should take them every 2 days considering my aches and that's obviously not possible because of the costs.
It takes lots of strength and patience to accept this! Let's hope that over time things will get better and maybe our body will get used to it!
Hi I am wondering how everyone is now the summer is almost here? It feels different to last year when we were still in treatment but at least able to be outside! So much rain now. My oncologist switched me to exemestane, it’s the same group of oestrogen blocking drugs but he thought the arthralgia might be less. Sadly it’s no different and I remain in constant pain especially at night and early morning. Another 4 years feels hard to bear but I just keep saying it’s not cancer and I will manage. Another suggestion was I could change to tamoxifen, but I think that has its own side effects too. Is anyone taking tamoxifen? Another biphosphonate infusion in July and still having scar therapy, seems we can never escape it. Sorry to moan, I really hope you are all well and enjoying getting back to a degree of normality!
hugs to you all xx
gosh there are a lot of us with aches and pains on letrozole. I am so grateful to be treated for breast cancer but as others have said we will be on this drug for a long time an need to find ways of coping. My partner does not want to listen to me complaining about pain...so I don’t! But some days are really bad and other days just manageable. I did some reading and there have been a couple of studies that suggest glucosamine and chondriton helps with the pain caused by this group of drugs. I checked with my surgeon who had not heard of this but was happy for me to try. I have to say I do think they help. Stopped for a while and was Worse. I am on a very limited income and am glad that they are not expensive.
‘I also walk walk walk ... it really seems to help. Some days it is impossible so I rest. I hate relying on pain killers so it may be a useful option for some people.
I am really sorry to hear that others are having such a hard time - but if I am honest I am also relieved that it is not just me! I was beginning to feel that I was being totally pathetic, and should just pull myself together, and now feel less lonely with it all.
And you are right Sally, we should enjoy Christmas as much as we can - so I wish you all a peaceful and happy Christmas and hope we can look forward to better times next year. Take care 🎄
@JPet you are definitely not alone! Today I asked my husband as usual to massage my joints, I said I feel as though I am being punished after all the cancer treatment as I have had so little sleep and my whole body hurts. I can’t get up yet. Probably because I am 63 I don’t have hot flushes - went through all that about 10 years ago - but everything else is so similar to you all. It feels like this is a stage in cancer treatment that isn’t really described in detail or explained. Like your dog walk, I do try to walk every day and I do think it helps until the next day!
Take care everyone and try to enjoy Christmas despite all the restrictions we live under, at least we have life ❤️
@Sally63 @SheilaJ It is so good to finally find out that what I'm experiencing isn't unique to me! My sleep too is horrific. Takes ages to get to sleep and then the night sweats and aches wake me up constantly during the night. I too can't get out of bed until around 10am and my partner brings me tea until I drag myself out of bed.I generally take the dog for a good 45 minute walk across the fields which is in itself exhausting - I get out of breath so easily and the dreaded hot flushes...). Does anyone else suffer with breathlessness? I used to smoke but stopped when I was diagnosed in January. But honestly thinking my efforts have been wasted as felt way better when I smoked! Obviously not going to start again but in my angrier moments I do wonder why I bothered. Hugs to all x
Hi again Sheila, my sleep is awful. I wake every couple of hours with joint pain, I start the day exhausted. I uncurl my body and dont really get going until about 10, my dear husband brings me coffee in bed every morning because I’m so slow. I do improve as the day goes on and walking helps but my work is quite intense so I don’t have time to exercise often. Dark evenings don’t help.
I wasn’t prepared for this at all and by the sounds of things there isn’t much difference between Anastrazole and Letrozol so it’s Hobsons choice! Ah well, it’s not cancer or Covid, this too shall pass eventually. It helps to know we are not alone, hugs to everyone xx
I feel less alone after getting these replies, so thank you!
I was actually out this afternoon doing some physically distanced shopping (live in a small town so quite easy) but felt so tired when I got back after a busy morning too that I just slumped with a cup of tea, and watched the news. Bad idea, it was so depressing.
So i felt I had to cheer myself up and did a 15 minute dance workout on youtube to One Direction (I know, but the songs are so catchy).
I couldn't keep up at all but I felt better and more energised and definitely more cheerful afterwards. So on some days I don't manage any exercise at all, but even a short session makes me feel better, and I hope might have some cumulative benefits, so I just tell myself I need to keep going and not worry so much about not being 'back to normal' yet. Maybe it just takes a long time, or maybe I just need to learn to manage lif a bit differently. COVID in the background doesn't help - and I don't always know if sleeping so badly is the letrezole or worry about the epidemic. Does anyone else find their sleep patterns are disturbed?
Hang on in there!
Definitely going to try pirates. @SheilaJ I hear you on the inability to get up in the morning. I used to be up at 6am and travel into London, I definitely couldn't do that now, luckily my firm is working from home but even so I don't start until 11am. I'm lucky that have been so understanding. I still have my unopened box of Letrozole and just keep purring off starting it. Coming off the Anastrozole made no difference to the pains so I hope thr Letrozole doesn't make it worse. Having said that, my body already feels 90 years old.
I feel just like that Shiela, I am the same age as you. Maybe I should try Pilates or yoga in the new year!
I too feel very sad and depressed about the side effects of letrozole, one of which for me is extreme tiredness - always absolutely knackered by the end of the day. Ok I am 63 and still working, but before my surgery in July I was always out before 7 in the morning for an hour with the dogs, now can barely get up before 830. I try to keep walking and doing other stuff but it's really beginning to get me down. I feel I have aged 10 years in 1
I do wonder if it's partly depression due to the general awful situation, and I too feel I shouldn't complain. I love my job but am at the point of calculating whether I can afford to retire
On a more positive note I have found that Pilates does help me. I try and do just a little every day if I can, as well as weekly class, and I know it makes a difference because I feel worse if I don't do it - so that is very motivating!
I guess it's just about trying different things to see what works, but it can be hard going.
Good luck everyone!
It feels as though we have no choice, I really wasn’t prepared for this and feel I shouldnt complain as at least joint pain isn’t cancer! But I have to uncurl my body every morning, and it doesn’t sound as though there is an alternative unless CBD can help, let us know please! 💕 hugs to you all
I switched to letrozole to see if it reduced my lower back pain and migraines, but it worsened the migraines and got shooting pain in my wrist as well, it just didn’t agree with me, I, like many feel stuck between a rock and a hard place because I need to take it. I hope that in time my body will finally get used to it but who knows. Please pm me and let me know if the CBD helps!
@Cara247 I know what you mean about quality of life! I still haven't started the Letrozole in case the pain gets even worse. Can't believe I can barely walk. It eases a little during the day but then back with a vengeance late afternoon. A friend of a friend who had the same issue apparently swears by CBD tablets so I'm going yo try those too. I will report back!
I really struggle with Anastrozole, started it a year ago and every morning I wake up in absolute agony it affects almost every part of my body from head to toe. Some pain eases after I get up but mostly have it round the clock. Tried switching to letrozole. but it was even worse, had four weeks off but things didn’t improve either. Quality of life seems to be a thing of the past!
Hi I'm new to the forum but am so so SO pleased I have found these posts. I finished chemo end August and RT end September. I started Anastrazole September. Since then my aches have just got worse. I was 50 in October but my body feels like it belongs to 90 year old! My oncologist blamed it on the Anastrazole and I have been off these for a month but no change. Am meant to start Letrozole this week. Not sure I can cope with living in this pain for 10 years. Am trying Turkey Tail and Reishi mushroom tablets.
Hi Cara247 and Sally63,
The Anthony William cleans I did was the one called "The Original 3:6:9 Cleanse" in the 'Cleanse To Heal' book on pages 109-129.
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Hi I also suffer terrible joint and back pain, you mentioned Anthony Williams cleans, can you tell me which one helped you as I might try it? Thanks