Hello
i wonder if someone could help/advise, please. My mam was diagnosed with metastatic breast cancer and her treatment is Letrozole (been on it since September last year). She has been having pain In her joints and especially one of her knees. Her oncologist and gp has said that she can only take paracetamol and can’t give her anything else. She is due back soon and will ask again but in the meantime would hot or cold compress help (can’t remember which though!). She is taking cod liver oil too.
thank you
nic x
Hi Nicklia
I was also prescribed Letrozole and coped for around 6 months with it, I then started to get really bad pain in my lower back so phoned my breast care nurse in despair. She spoke to my surgeon who said I could come off the tablets and go to see them 2 weeeks later, within days of stopping I was pain free. I felt like a new woman! I then went back to the surgeon and he said I still had to have hormone tablets so he put me on Anatrozole - I was on them for a month and went back to see him yesterday. I feel absolutely great on these and he now says I can continue with them. I know of several others who have asked to change - Letrozle is the strongest pill and Anatrozole the next strength down. I think we automatically get started on the highest strength and unless we complain , continue to take it. So it is definitely worth asking about a change. I too was taking cod liver oil, glucosamine and Omega Oil and was having to take loads of painkillers too. I still take my supplements but haven’t needed any painkillers at all recently. Oh and heat packs or ice packs really made very little difference.
Hope this is of some help
KM x
Sorry the tablet is called Anastrozole - I spelt it wrongly!!
Letrozole and Anastrozole are both Aromatase Inhibitors. I think it’s misleading to say “Letrozle is the strongest pill and Anastrozole the next strength down.”
Nicklia - sorry to hear about your Mum’s joint pain. If it’s any consolation I did suffer joint pain for several months when first taking Letrozole and it’s now abated. Maybe a call to her Breast Care Nurse Team might be useful for suggestions about whether compresses might help.
I also suffered with terrible joint pain, my onc suggested tring a different brand and within three weeks of swapping brands my joints are easier, only problem is now a nasty metalic taste in my mouth, still I can live with that!!!
Puffy White clouds - I have no wish to appear to be misleading anyone but that is what my surgeon told me and as he has more knowledge than I have - I tended to believe him. And yes, I DO KNOW that they are both Aromatase Inhibitors - and at the end of the day Nicklia was only asking for some helpful advice. When I was suffering I did contact my breast care nurse as did Milo1 - and both of us obtained a change of tablet - I know of several other people who have had to change from Letrozole and was merely pointing this out!
Hi,I changed from anastrozole to letrozole because of joint pain,I still get it equally as bad so don’t think there is much to choose between them,for me anyway,we probably all react a little differently,but I take co-dydromal which is a stronger painkiller to cope with effects although I only tasks them at night in the hope of getting a good nights sleep!
Take care,hope you get some pain relief’
Di.x
Hi Nicklia, I’ve been on Letrozole since sept too and have suffered quite a lot, particularly shoulders and have trigger finger in my ring finger. My fingers are very stiff and painful when i wake up. However my symptoms seem to be getting a little easier ( except fiinger stiffness in the morning or after not using much ) which may be my body getting used to them or I started doing Pilates twice a week about a month ago. This seems to be helping with flexibility. I can only take paracetamol as I’m on a trial drug which stops me being able to take anti inflammatories. I saw a rheumatologist who said it is prob the letrozole and has sent me for cortisone injections in my shoulder and finger and some physio. She also said try fish oils and glucosamine and chrondoitrin (something like that!) but only try for 3 months to see if they work. If not making any difference stop them as its a waste of money!! She also said if pains got too much she would suggest coming off the trial so I could take anti inflamatories. At the moment I’d rather stay on the trial and hope that the things I’m doing will hope keep the SE’s of letrozole manageable.
hope your mum finds some relief soon,
Gaynor xx
Sorry me again, it was my oncologist who sent me to rheumatologist, perhaps your mum could ask to be referred.
Gaynor x
I’m also having terrible joint pain on letrozole. I was fine for the first 6 months and now have terrible pain in my hips, knees, feet, back and hands. I’m hoping to switch to something else. Yesterday, when I got up from sitting I struggled to walk and felt about ninety. Before all that started I had begun really increasing my exercise but now it’s simply too painful afterwards.
Kitten-mad - it can cause anxiety for women if they think they’re not on the best or ‘strongest’ tablets to treat breast cancer. I’m sure your doctor was trying to be helpful in saying that letrozole was the ‘strongest’ but it would be much better if they talked about research evidence instead and I’m not sure there is anything to suggest that and I’ve looked and asked. So much seems to depend on the preference of individual doctors rather than anything else. In fact, within the same hospital my Onc wanted to start me on arimidex but then I had a prescription from the surgeon for letrozole.
Nic - I think that if we’re lucky sometimes a switch to another AI can be helpful and it’s definitely worth asking. Also, it would be good for the doctors to understand how much pain she is getting - is it inhibiting her mobility, does she wake with pain, what sort of pain is it etc. If the pain is really bad and not controlled by paracetamol then they will have to look at other options for pain control.
Elinda x
Hello Milo 1 I’d be very interested to know which brand you were on , and the one you have changed to. My prescription keeps being made up with different brands and with the last change I’ve developed very bad stiffness. A few months ago I was feeling so good , now like i’m 100 years old. Have been on Letrozole for 3 years now. Thanks
This is such a cool thread. I was on Letrozole for 6 months before coming off to go on to chemotherapy. Within a fortnight my pains had gone-I have Osteoarthritis so it is hard to tell what is OA pain and what is the Letrozole! I put my lack ot pain down to the weather (warm-ish) and the steroids (my asthma has also been pretty good the first few days after my cycle when I’m taking the steroid tablets). However I would NOT recommend chemotherapy to cope with the SE’s of Letrozole! It’s like using a sledgehammer to crack a nut (in my case a tumour about the size of a Brazil Nut). I know I’ll be back on Letrozole in September- just in time for the cold weather - so I imagine I will need to think about more Pilates (v helpful in the past!) and more NSAIDS and panadol (which I have managed to get my GP to prescribe me in the past!). Good luck Anon and all of you.
This is such a cool thread. I was on Letrozole for 6 months before coming off to go on to chemotherapy. Within a fortnight my pains had gone-I have Osteoarthritis so it is hard to tell what is OA pain and what is the Letrozole! I put my lack ot pain down to the weather (warm-ish) and the steroids (my asthma has also been pretty good the first few days after my cycle when I’m taking the steroid tablets). However I would NOT recommend chemotherapy to cope with the SE’s of Letrozole! It’s like using a sledgehammer to crack a nut (in my case a tumour about the size of a Brazil Nut). I know I’ll be back on Letrozole in September- just in time for the cold weather - so I imagine I will need to think about more Pilates (v helpful in the past!) and more NSAIDS and panadol (which I have managed to get my GP to prescribe me in the past!). Good luck Anon’s Mum and all of you.
I have been on LETROZOLE for 7 months. I do get achey joints. Knees and legs usually after I have been sitTing for a while. Had a bit of backache as well for the last couple of days but I don 't know if that is SE or whether I have done too much. Going away for a week tomorrow and you know how we like to do extra cleaning and changing beds etc.!!!..however to get back to the point. Since I started LETROZOLE my tumour markers have dropped hugely and had a 6 month scan a couple of weeks ago…there had been a significant improvement in my secondaries!!!..So in my case - and I know that it is different for everyone - the aches are worth the results…
Sorry everyone for multiple posts…my computer is slow today and I got a bit carried away…
Hi All
I have been on Letrozole since last September, and I too have knee pain and stiff finger joints. Thought it was just me. I have spoken to my oncologist but she didn’t say what I should do or take, I think taking Letrozole is the lesser to two evils as it seems to be controlling my mets. I did ask about cod liver oil capsules but she said it was not proven they worked.
Good luck to you all
ChrisL
I don’t think there’s any difference in the strength as far as preventing recurrence is concerned, but there is a difference in the strength of side effects, or should I say more people have trouble with Letrozole. Which doesn’t mean to say that some people might not find it better.
I am on Exemestan (Aromasin), and for me that is much better than Arimidex (Anastrozole). Never tried Letrozole, but sometimes gone back to Tamoxifen (I’m past menopause but don’t dissmiss Tamoxifen - it is pretty effective). I have heard that Aromasin is the easiest to tolerate for the majority of people, but I’m not well informed about that.
My experience with Ananstrozole was that I got very bad trigger finger/thumb pain after some months, and that’s why I changed, because I was worried about having trouble typing. With Aromasin I got twinges of this finger/thumb pain after some months, but they came and went and I don’t have them any longer (over a year on).
My onc referred me for acupuncture as I was having terrible pain in my feet and legs. I have had 6x weekly sessions and it has helped enormously. I can now get out of bed in the mornings and walk normally to the bathroom - I don’t know how long the effects will last. I had the 6th one on Tuesday and go back in 4 weeks for a top up.
Hi Kirsty16,
The brand which gives me the least aches and pains is accord, my old brand was zentiva, not sure why is is better for me however!!! this last fortnight the ache in my hands and feet have been much worse especially on a morning and sometimes I just want to SCREAM LOUDLY with frustration, I have been going swimming twice a week recently and am wondering if that is making it worse sometimes I do not know what to do for the best 