Following lumpectomy (Ductal invasive) I'm due to start Letrozole tomorrow, but certainly not looking forward to getting potential side effects. 9 yrs ago I had Lobular invasive cancer, on opposite side, and was on Tamoxifen, then Anastrozole but stopped after a few years due to side effects, mainly joint pain and stiffness.
Well, 9 yrs on and my fingers have quite bad arthritis, unable to make a fist due to the mishapen and swollen joints. Consequently, I really don't relish getting further pain in my hands as some tasks I can no longer due, others need certain aids in order for me to achieve.
I've also got arthritis in several joints, making movement quite difficult much of the time and only occasionally managing to have a walk 'around the block'.
Also, I've heard tinnitus mentioned quite a lot, whether it be related to AIs or not. I already have tinnitus in one ear, occasionally in the other ear. I have to sleep with music playing quietly otherwise I'm very conscious of the tinnitus and find it difficult to settle / sleep.
Another aspect that concerns me is that I've had a few falls recently, one dislocating my shoulder and another, just a couple of months ago, seriously bruising my ribs/tissues which delayed surgery. As I understand it, Letrozole particularly affects bone density. I'm 70 yrs now and do not want to be breaking bones if I fall again.
I appreciate I need to discuss this with GP but the consultant is keen for me to take AIs, particularly as I've had ER+ breast cancer previously. Life's not good to me just now, I feel :(
If anyone has any suggestions re how best to tolerate these medications, I'd be very happy to hear about them ;)
CD
Hi
I’m on Letrozole and to reduce the risk of osteoporosis I’m also on Zoledronic acid infusions every 6 months for 3 years- may be worth asking if that’s feasible for you too?
I already had tinnitus in both ears but have to say that I’ve not noticed it being worse so hopefully same would be the case for you. To help with joints I’m taking Solgar magnesium citrate (800 mg at night) - I don’t know if it’s a coincidence, but I ran out of this dose about 3 weeks ago and started taking some that were 500mg mixed magnesium citrate & oxide and my joints have been worse. So back on the higher dose from today and I’ll be interested to see if it improves again (if it does and it’s purely placebo, frankly I don’t care!)
Hi Mollusc
Thanks for your reply.
Bisphosphonate were mentioned at clinic, last week but, first I'm to have a Dexa scan to check the state of bone. I got the impression this would be a base-line but assumed, if not brilliant, then something would be considered. I had a Dexa scan about 10 yrs ago, after I'd broken my ankle but it was +3, or something, so considered good.
As for the Magnesium, and the drop in dose, I find very interesting. I seem to remember being recomended Magnesium (spray to skin and rub in) for night cramps. I didn't feel it was effective so stopped. I've still got them.
Did you start taking Magnesium before joint pains started or as a result of joint pains, with Letrozole, please? I suspect as a result of ...
Many thanks for your help
Hi
No, I actually started taking the magnesium (plus tart cherry capsules) pre- Letrozole, whilst still on tamoxifen ( I had six months of that first) to help with sleep and to fend off an possible joint aches from that and just kept going! I also take Loretadine antihistamine for allergies and some people have reported that helps with the Letrozole aches. The joint pains and fatigue have definitely only become an issue ( and I must say the fatigue is worse than the joint pains- back to just post-radiotherapy level fatigue I reckon) in the last two weeks. I’m now just finishing my second month of Letrozole. I don’t get pains/stiffness in my hands though - hips mainly and feet first thing in the morning
I didn’t have a DEXA scan pre Zoledronic acid, I was just put on it by my oncologist, which may be an age thing in my case as I’m 49 and they have made me menopausal as part of my treatment
Wishing you all the very best!
That's very interesting re people reporting Loretadine helping. I do have some vague allergies and have had problems with tablets, from a particular manufacture, not being effective at all so presumably something to do with the fillers.
I'll see how I go without Magnesium / antihistamins but will bear them in mind if / when I have any issues. Definitely worth a try of these.
Regarding the Zoledronic Acid, you being younger, is likely the reason you're on that. I'm 70 now so not quite the same necessity ;)
Thanks very much for your help
I do wish you well and hope your treatment plan all goes well. :)
I suppose the age difference would be a factor!
well, I don’t know if it’s purely psychosomatic but I’ve been on the higher dose for two days and my joints are feeling less sore than they have for the last couple of weeks.......
wishing you well too x
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