Hi, I was on tamoxafen for almost a year with minimal SE’s I had some hot flushes but not any worse than the chemo had given me but I am on an antidepressant that is known for helping with hot flushes. I then had my overies removed 10 months ago and because I was now post-menopausal I was switched on to Anastrozole since then I have suffered with a terrible hip pain and feel stiff and old (I am 39 years old)
i saw my oncologist today and she has taken me off the Anastrazole and putting me back on Tamoxafen. She said that quality of life is important and on tamoxafen I was more active and keeping weight down and exercise can also help prevent reoccurrence so if I have a healthier lifestyle and feel better on tamoxafen then that is better. She said Anastrazole makes a person feel old. I also have start of osteoporosis and because I. Now have no overies this can get worse. Tamoxafen is kinder on bones.
I too am suffering with the effects of Exemastane 5 months on. I suppose with an Oophorectomy in Jan 19 then straight onto Exemastane, my body has had a major shock with being deprived of Oestrogen. I take a daily Glucosamine with Chondroitin supplement which I believe has helped me, especially as I struggled to lift my arms above my shoulders first thing in a morning and I struggled sleeping at night due to the aches. I still have aches but not as severe, my main issue is in my hands now though 🙄. I also take Yoga classes which has helped me immensely since I started practising 2 months after my mastectomy, (July 18) not only for my physical health but my mental health too. Once I’m moving around I feel much better but like you, if I sit too long I get stiff.
I can so sympathise with you!
I started on Anastrazole at Christmas 2018 and after a raft of side effects I was changed to Exemestane in April.
Well the horrendous constipation and stabbing headaches disappeared, my appetite came back and the night pains in my legs went too.. Also trying to dance as a form of exercise was difficult on Anastrazole as my ankles didn't seem to do as they were told.
But I am left with aching joints, have to run my hands under the cold tap in the morning to get my fingers working and climbing stairs is painful on the knees. I continue to have minor hot flushes. I can dance though! (badly...)
I had none of these things before the tablets - I am 63. If it gets no worse then I think I can live with it for 5 years. The bone scan revealed my bones are as tough as old boots, so if that doesn't change when it is done again in a couple of years, then it will be Ok.
But I will so be looking forward to feeling may real age instead of 20 years older!
I’m on Letrozole with similar side effects. I’m surprised at your pharmacists comments as my Onco says it’s the binding agents that can cause problems. I’ve changed my brand three times until I found one that suited me. I’ve found the Cipla brand absolutely excruciating, but Teva is my best one. Accord is ok. Everyone is very different and I think it’s worth a try. X
Moiramomap thanks for the information, I have been using a magnesium foot soak every couple of days as my feet have been extremely painful and finding it helps a for a while think I might try the magnesium spray next, will let you know if it helps. I have also been toying with cbd oil but so far been reluctant to try it, need to find out more about it, suppose I am a bit of a coward really. Best wishes Eileen
No real information yet x I'm waiting for someone like me x I spoke with my local pharmacist. She was very helpful when I was hurting from the anastrazole x my breast care nurse said that they might shift me to a different brand of anastrazole but pharmacist said that that wouldn't be helpful as the binding agent is the only thing that is different x the drug is still the drug x I felt she gave me good info in order to go well informed to discuss with breast care nurse x I was able to say I didn't want a different brand of Anastrazole. I am also attending the chiropractor to establish if there is any other cause of the body stiffness x she is working on various areas to try and loosen things off and she recommended I didn't make any rash decision to stop hormone tablet until she'd worked on all the tightness in my body x I went into the menopause after chemotherapy for bowel cancer in 2002 and didn't suffer any body pain like this x so I'm looking at all my options first before I make a decision x I will take all the advice to my breast care nurse when I've gleaned it all x Just heard a bit on TV about CBD oil - wonder if anyone has tried that?
Evie I am sure the forced lack of oestrogen is causing the side effects, I have been through a natural menopause and did have some pains in both my hands and feet but it was intermittent and never lasting very long. The pain I am getting now especially in my feet is pretty much constant, it would be good to get an answer but I suppose as everyone reacts differently to treatment that probably won't happen. Live in hope that one day my feet will not hurt any more, best wishes and hugs to you. Eileen x
Thank you both for your kind hugs and wishes, really appreciate that.
Moiramomap - it’s great that you found this forum and especially that you have found the “Someone like me”. I’ve not used that service, but it’s good to be reminded that it is there. I wonder if you have got any further information today? Re Tamoxifen - I am quite sure there are equal numbers of people suffering side effects, I suppose I was just focussed on reading about Anastrozole and Letrozole as my consultant was thinking about switching me to one of them.
Fezzy - yes you are right, we will all get there, BC just keeps throwing challenges at us.
I was reading one thread yesterday where some ladies suggested that perhaps it was the lack of oestrogen rather than the tablets that cause the SEs. I wonder if I would have the same SEs if I had gone into a natural menopause 🤔. I’m not at all medical so don’t know the answer, just thought I’d share something I read.
Hugs to you both.
Thank you both for your hugs and I will definitely speak to Someone like me it sounds as if they may have some information that may help, but it is also good to speak to you both, thank you for your support, we will get there in the end Moiramomap and Evie-S xxx
Thank you Evie-S for your hug which is most welcome x interesting you should speak about tamoxifen as yesterday I saw lots of posts about Tamoxifen and similar side effects and I am not sure whether I feel encouraged to try it x
I am going to speak with some of the volunteers at Someone Like Me - I've found this hugely helpful at the early stages of diagnosis - and see if there's a glimmer of hope from their experiences x armed with that information I will again talk to my Breast Care Nurse and see what she might suggest. This is my first visit to the forum and already it has been so encouraging so thanks so much x I have taken it all on board x hugs right back at you x I hope otherwise you are getting stronger❤️
Hi Moiramomap and Fezzy1952
I’m really sorry you are both suffering side effects. I’ve been reading a lot of these posts as my consultant has been considering changing me from Tamoxifen to one of the other AIs. I’ve read so many stories like yours that I am very nervous about changing. I wanted to reply to give you both a hug but also to ask whether you have considered switching to Tamoxifen? I know some people have side effects with that too, but I have been fine (touch wood) so far and have been on it for 2 years.
Hi there and thank you so much for your reply to my post - it is pretty awful isn't it - the nurse I spoke to on the helpline said almost half the calls they get are about side effects of hormone tablet. I was reluctant to ask for a change but - yes - you are right - they both have produced the same side effects and I'm finding it extremely demotivating. I'm a go get em kind of girl - never put off till tomorrow and all that - but I'm neglecting the house and the garden and that's just not me. I'm too scared to just stop the hormone tablet - I def don't think it's the infusion of bisphosphonates - I don't seem to have had any reaction to it at all apart from first one after which I felt grotty. If you haven't tried the Someone Like Me service through Breast Cancer Care - I highly recommend it - that's my next port of call tomorrow to speak to other people who have gone through all this and maybe glean some more information/suggestions on how to deal with it - I only usually need pain killers at bedtime but like you it's after sitting and on waking in the morning that is worst.
I hope you continue on the road to wellness and find something out there to help you - it definitely helps to know we aren't alone - all the very best for now and thanks again xxx
I felt I had to reply to your post as I too have exactly the same symptoms as you, I was diagnosed with IDC grade 3 ER8 and had wle and sentinel node biopsy and superior cavity shave in July last year and have been taking anastrozole since September, didn't have chemo but had radiotherapy. I had no side effects except hot flushes for 2 months but one morning woke feeling as if I couldn't get out of bed, my whole body was painful but especially my feet and hands. Like you I am fine if I keep moving but as soon as I get up after sitting or sleeping I can hardly walk the whole of my feet are painful and its agony trying to get moving. I have considered asking to change to something else but from what I have read they all seem to have the same side effects and really can't face taking anything else in case I feel worse. I was also taking alendronic acid once a week for 3 months but I had terrible diarrhoea and was loosing weight so was advised to stop by my gp, I have an appointment at osteoporosis clinic in July to see about getting infusion instead of tablets to see if it will be any better, so I can't blame bisphosphonates for the pain. I am trying to be positive as I know I have really no alternative and am not brave enough to stop taking anastrozole but the pain is so bad some days it gets you down, so you really are not alone in how you are feeling if that's any consolation. I wish I could offer you some advice but other than taking paracetamol and occasionally cocodamol I don't know what else to do. Best wishes and hugs to you Moiramomap and hope you get some good advice. Fezzy1952
I had a left mastectomy in August 2018 followed by 3 FEC chemo cycles - I am currently receiving Herceptin 3 weekly (1 year) - bisphosphonate infusions (6 monthly for 3 years) and hormone tablet.
I started on Anastrazole in January 2019 and fairly soon experienced pain in my shins, forearms, elbows - it didn't prevent me from doing anything but was fairly unpleasant. On contacting Breast Cancer Care helpling and speaking with volunteers from the Someone Like Me database - I was advised to give it at least three months to see if there was an improvement then contact my specialist nurse. I didn't find an improvement and was changed to Exemestane early April and was encouraged initially as the pain didn't seem so bad - but now find I am most uncomfortable - not so much while on the move but after sitting or when I waken in the morning - everything hurts - even the palms of my hands and soles of my feet. The radiographer who did a recent bone scan said it was likely to be the hormone tablet rather than the osteoporosis in L2/L3 and osteopenia overall.
So here I am six months in and I'm thinking I don't think I can endure this for another 4 1/2 years but I'm afraid to just stop it. I understand the bisphosphonates can cause some joint/muscle pain but I recently had the second of these and the pain has always been there and hasn't got worse since the infusion. So - what to do - I'm finding it hard to motivate myself to do much - after sitting and first thing in the morning I am so stiff to get moving again - I feel as if my ankles have fused and it takes me a few minutes to get fully mobile. I am constantly aware of the various places it hurts most - I only need paracetamol usually at bedtime as I'm OK when moving - just worse after I've sat down for a bit.
I am going to speak with Someone Like Me Again but wondered if anyone else out there is finding this body pain totally demotivating and whether anyone has any advice on what it would be best to do - thanks in anticipation