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
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 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 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.