Hi all, I’ve been on Letrozole for 6 weeks and have been experiencing bad bone pain, especially the tops of my shoulders and shoulder blades.
I spoke to my BC nurse this morning and she has suggested I stop taking it for two weeks to see if it is the Letrozole causing the pain and not something else.
I do trust the nurses advice, but I am worried slightly that stopping it after such a short time may have damaging effects.
Has anyone else had a break from Letrozole and any advice please.
I think there's two separate considerations - people seem to start the hormone blockers at different time of their treatment. Some right at the beginning n some at the end, and anywhere in between. I doubt 2 week break would make any difference to overall outcomes.
if you take the break and your pain resolves, then it is worth bearing in mind that they say it takes a good 6 months for side effects to settle. I had very bad write pain a few months in that lasted 6 months and then resolved. So it wasn't until about 9 months in that things settled better for me. It also took me that long to figure out which brand was best for me, as that can make a big difference.
So I would say take the 2 week break if you want to know whether the letrozole is the culprit, but be prepared to go back on it and suffer the pain for while. It took months for me not to have sore feet first thing in the morning or hen I got up from sitting, but it did settle and was better with movement.
Thank you for your reply. That makes sense, I started Letrozole after my surgery and before my radiotherapy which I have just finished.
Every little thing/pain worries me now and the fear of reoccurrence. I guess that’s fairly normal though.
Hi Valleyside
i am also on Letrozole , 7 months in now , with bone pain etc .the pain has subsided somewhat over time but I get flare ups every now and then . I am on it for 10 years . I am having to come off it for 8 days due to having covid and needing to take the anti viral tablets issued by the hospital .
I think we have to trust our hospital and cancer teams with any advice they give us . I do not think they would advise anything that was detrimental to our well being . I can understand what you are thinking as the cancer ‘journey’ is the hardest thing I have ever had to face .
I also had to take a daily ibandronic acid tablet ( bisphosponates) which I was struggling with . I was advised to ‘ have a break ‘ from them for 3 weeks to prove that it was the tablets that were causing my symptoms . It turns out it was so I receive a 6 monthly infusion for this particular drug now and had hardly any side effects from . It’s worth proving that it is the tablet causing the issue as there are alternatives .
I hope this helps .
Take care and good luck.
NannaJ x
Thank you that advice helps. Your right the cancer journey is the worst thing imaginable, I still can’t get my head around it all.
I just need to trust the doctors/ nurses as I know they wouldn’t advise us to do something if it affected our well being xx
Did you gain weight with it as well? I already had osteoporisis and painful knees before starting it. My cholesterol had been going up slowly but now 2 mths in I'm going to ask for another cholesterol test to see if I really need statins. My GP put them on the list should I need them. I'm not going to start something else unless I can see why. Good to have others further down the line to ask.
I have gained weight. I lost weight last summer and I wasn’t dieting. I got my diagnosis in October so wondering if cancer was the cause.
I already had high blood pressure and high cholesterol and was on meds for both. This was flagged up to the oncologist when she said I was going to be on Letrozole for 5 years.
Love the lucky pants
It's such a hard journey, it's dealing with one thing at once. Who cares about weight gain in the scheme of things. But... for me it's about trying to keep going, work on my knees. Walking is a bit of a chore but if it helps I'll keep doing it. I went to one of the Look Good Feel Good sessions today. A make up and skin care session for 2 hours with a free bag of products to try and keep.
How kind is that, really good to meet the other women as well. Then I went to the gym, as I said it's just to prove to myself that I can. I have got used to going at a slower pace, need to work out how to speed up a bit. I think Letrozole is part of it. I'm going to fight it xx
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