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.
Would you also be interested in trying a daily routine (for free) that I have put together to help rebuild mind, body, and soul following cancer treatments? It has been very useful for me and I would like to share it with others. If so, please contact me at email@example.com.
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
I had the same problem. Every single joint hurt on my body. I was told it was a side effect from chemo, even though it started about 6 months after my last round. I ended up trying the health cleans from Anthony William and 90% my pain went away in a few days. I couldn't believe it, it was remarkable! I continue to do the cleans every two months.
Thank you for your advice and will certainly bear it in mind should my aches not improve. I agree with how you feel about taking Hydroxy......... we've had enough poison in our bodies haven't we. But sometimes you feel it's worth it. Good luck with it I hope it's works for you xx
Just knowing that someone else has experienced this helps me so much and I really appreciate your reply. I feel like I'm taking two steps forward and three back. I will continue with my exercise and give it time. I'm cabin crew and often do 12hr shifts it's hard work but hoping to return next year although it all seems impossible now. If my hip doesn't improve I will speak to my GP. Take care and stay safe ❤ x
Since I put my original post regarding aching joints I have seen a rheumatologist and been told that they think I have mild inflammatory arthritis which they think could be something to do with chemo, cells attacking cells I think she said. Great!!!! They’ve given me a prescription for Hydroxychloroquine which was used as drug for malaria prevention. I’m not that keen on taking it tbh, it can take a few months to start working but if it helps the pain, I might give it a go, there are the usual side effects and some different ones i.e bleaching hair and hair loss, tinnitus & visual issues but she said she’d never seen any of these issues.
For months after my treatment ended last year in June I had the same problem. Moving was fine, but getting up after sitting down was awful. Definitely felt 20 years older. My BCN recommended lots of exercise, both stretching and something to strengthen the bones and joints. So, I've been doing pilates twice a week and started running 3-4 times a week. I'm pretty rubbish at running, but this regime has definitely helped. My knee joints still feel stiff first thing in the morning, but otherwise I'm much better. The running initially felt a bit counterintuitive, but I took it really slowly and eventually things started to improve. Give yourself time though. You've only just finished your treatment. Find some exercise you enjoy - and check with your BCN beforehand, just to be on the safe side. And be kind to yourself. You've been through a lot. It's not surprising your body needs time to recover.
Hi. Thank you for sharing your troubles. I had stage 2 ductile breast cancer. I finished chemo, r therapy 1st Aug and feel like I have the body of a very old woman. My joints hurt especially my right hip. The pain is severe at times, even if I press on it the surrounding muscle hurt. I can go for a long walk with no problems (which i do daily) but sit down for 5mins and I struggle to get up. I'm hoping this will go of its own accord but if anyone else has had this problem can you please advise me what I can do. I can't return to work like this. Thank you.
I live in Portugal. There’s no reason why you couldn’t access excellent NHS treatment out here if you become a resident (easy) before the end of December. Please email me if I can help you at all. Kathymorgan248@gmail.com. I have had such good treatment here in specialist (NHS) hospital in Coimbra, renowned for being a leading teaching hospital in Western Europe
Most of the ladies I know in similar situation don’t seem to have any after effects, so I was beginning to think I was in the minority! I go to bed each night thinking maybe tomorrow things won’t hurt quite so much next day.....
Alibobs, that's awful. I was under the impression that the oncology team would also keep me under review and that alternative meds would be possible if the side effects got too bad. Would your GP refer you back to the hospital?
Tait I'm sorry you are having similar problems. Although I do find it reassuring to know I'm not the only one. Ah well I suppose we should be thankful we are here. Tomorrows a new day let's hope we all have a better one💗💗
Hi CMG.. I dont have a medical team as such as was discharged from them last year I think. Just have yearly mammos and bi annual dexa scan now. But when I did mention the problems that I think are attributed to anastrozole to my GP she just batted it away saying she didnt think it was.
Similar story.....I’m 17 months post lumpectomy/node clearance, chemo and RT and suffer chronic pain in both shoulders, neck & lower back, and daily headaches. Really don’t know what’s causing it all. Tried stopping Anastrozole for 3 weeks and nothing changed, so can’t really pin the blame on that. I’m wondering if it’s related to the herceptin treatments which have recently finished, but who can tell!
I'm so sorry to hear that. What do your medical team say about the problems?
Sympathise with you about the Brexit fiasco too. 🤷♀️ who knows what's going on
2.5 years in following lumpectomy; sentinel node removal and radiotherapy, I have been on anastrozole since after my op. Suffered constant foot pain, muscle aches in my legs, frozen finger and thumb joint on the opposite side to my op and as of late terrible shoulder pain on the op side. I also have breast pain near my scar. I try to keep active, eat the right stuff and I also now have osteopenia from the anastrozole.
I'm fed up but scared to change or stop the meds. Our plans to emigrate are now in tatters too with caronavirus and the new Brexit regs. We simply would not have enough pension, once I can retire, to afford private health care and prove we have enough to live on to allow us to live there permanently. Another 7.5 years of this? Totally brassed off, just saying!!
Thank you, I've had a look but it won't let me in because I don't have a programme code.
But thank you anyway, I'll keep searching for something suitable and give my breast care nurse a call if it doesn't ease up xx