hello, I have been on letrozole for about 5 months now and have been having terrible joint/muscle aches. My right arm in particular is giving me a hard time.It feels heavy and so achy. Is there anyone else that is having similar problems? ( I had a tumour removed from my left breast a year ago and have undergone chemo and radiotherapy )
Monnie
Hi Monnie
Sounds like you and I have been travelling the same route at almost the same time.
DX just over a year ago although I had surgery before MX. I started letrozole beginning of June and have also had the terrible joint
/?muscle problems to the point that I did start thinking I could be applying for a blue badge! Some of the problems I have worked around but some remain. My biggest problem is in my hands and have recently had a bone scan to prove to my onc and myself that there is no major issue. Everything came back clear so it really is just SE’s.
Andie
Hi
I’ve just been told today that I’m being changed from tamoxifen to letrozole. The manufacturers have stopped making the brand of tamoxifen I was on and the generic tamoxifen just doesn’t suit me at all. I read your posts with great interest and have to say that I’m very apprehensive about taking letrozole. The most common SE does seem to be stiff joints which worries me a bit.
Jan xx
Hi,
I have been on letrozole for 3 years. I have a bit of stiffness in joints but nothing that bothers me.
Hi Margaretw
Thank you. I’m hoping that I’ll be the same. Loads of people are reporting stiff joints with Tamoxifen but I’ve never had anything like that. Fingers crossed. It’s really because I’ve been so well on Nolvadex-D that I’m worrying a bit. I’ll be better when I’ve started my new ones and know how they affect me. I hope you are keeping well.
Jan xx
Hi Margaret, I had to come off Letrozole as I was in tears with the pain in my joints and tingling down my left side (the opposite side from my BC). I was changed to Anastrozole. It still has side effects but nothing compared to those I had with the Letrozole. When on the Letrozole I was swallowing pain-killers like there was no tomorrow. Might not be the solution to your problems but you could ask your oncologist or Breast Care Nurse.
Seems that some of us tolerate some of the AI’s better that others.
Irene
Sorry I think my last post was sent to the wrong person, should have been to Moonie.
OOPs don’t this treatment mess with your brain!
Hi. I am starting Letrozol this week and there seem to be loads of possible side effects. I’ll also be starting radiotherapy soon while having the letrozol too. I’m a bit worried about this though they say it is ok. Have you lost your hair with the letrozol as this seems to be a common side effect too.
Hi Gillanne
I’ll be starting on Letrozole a week on Friday when I’ve finished my current pack of Nolvadex-D. Like you I’m a bit anxious about side effects. I don’t know how long it takes for the side effects to show themselves. I’m on holiday when I start Let. and I’m wondering whether to skip a day until I get back (don’t know if you’re supposed to do that). I don’t want to feel awful on my last day.
I should be interested to know what your experience is for the first couple of days.
Best of luck with it and also with your rads. It might be a good idea to start putting the aqueous cream on the radiotherapy area now to keep your skin in good condition. Rads is not bad, makes you a bit tired and sometimes a bit sore towards the end the only thing is it rules your life while you are going because it’s everyday.
Love and hugs
Jan xxx
I’ve been taking Letrozole for almost 3 months, so far it hasn’t been so bad, a few aches and pains but nothing I can’t cope with. I know its probably still early days but I feel better than I did on Tamoxifen.
I have just finished rads, so I was taking them while having treatment and it didn’t cause any problems.
My hair does’nt feel in particular good condition but so far its still there.
This is my second recurrence having first been diagnosed in 1986 so I don’t feel as complacent as I use to, and feel I need to persevere unless the S/E are really unbearable.
Best wishes
Jan
Jan - like you my local chemist has told me that my nolvadex will no loger be available soon -(anyone know why?). I am due to start on letrozole in Jan or Feb, having been on nolvadex by then for 5years, 4 months - so am a bit apprehensive after reading about side effects! Let us know please how you get on?
Carol
Hi Carol
AstraZeneca just aren’t making Nolvadex-D anymore. My GP says it’s a business decision because there isn’t enough demand. It seems such a shame when many of us are so well on that brand.
Like you I’m very apprehensive about changing but I don’t have a choice the generic Tamoxifen was just awful for me.
There’s only one way to find out about Letrozole so I’ll give it a whirl and I’ll keep you posted with how it affects me - hopefully not much.
I’ve been for my DEXA bone scan today. So fingers crossed
that the result will be OK and I don’t have to take any calcium tabs. I’ll rattle if I take any more tabs!!!
I hope you’re keeping well.
Love to you
Jan xxx
Hi, I had terrible neck and shoulder pain with Letrozole. It was replaced with Tamoxifen after 3 months as I was told I shouldn’t be suffering like that. Tamoxifen is fine except for the hot flushes, but I guess I have to put up with something.
Madeleine
Hi Madeleine
Thanks for telling us your experiences. It is very helpful to know how Letrozole has affected different people. As you say it looks as though we have to put up with something although I really haven’t had much while I’ve been on Nolvadex-D.
The generic Tamoxifen was a real problem, I stuck it for 7 months and then just couldn’t carry on with it. If the choice had been Tamox or nothing then I would have chosen nothing, it made me feel so bad.
As I say I’m not relishing starting on Letrozole but I can only see how I am on it. I’m trying to keep positive and convincing myself that I won’t have any really bad reaction to it.
I hope you are feeling well in spite of the hot flushes!!!
Love to you
Jan xxx
Jan - How did your bone scan go? Did you need calcium tablets? I think you said on another thread that you started Letrozole at the weekend. That was you, wasn’t it? I have been on it for 2 days - bit early for side effects!
Ann x
Hi Ann
Yes that’s me - started Letrozole on Saturday. I’m a bit stiff and achy at present. I’m hoping that it will wear off. I also feel very tired. The leaflet says that any side effects should only last a few days so mine should be disappearing any time now.
I got my bone scan results letter yesterday. It’s a bit confusing. It says that the scan results indicate that my bones are a little thinner than would be normal for a young woman in her mid 20’s (Wow, brilliant, I’m 62) then it said 'By definition this is the condition known as osteopenia!!!(Looked it up on the ‘net’ and it’s thinning bones!!! Maybe not so good then?) At the end of the letter it says ‘The good news is that your bone density is at the expected level for a lady of your age.’
A very strange letter but I think it’s good news. My GP hasn’t phoned to say I need any tablets so I think I’m OK.
How are you doing? I felt sick for a while on Saturday and Sunday about an hour after taking Letrozole but that had disappeared by Monday.
I’m going swimming tomorrow in the hope that will help with the stiffness. I’ll let you know.
Love and hugs
Jan xx
Jan
I didn’t get a letter about my bone scan, but my doctor printed off the actual report and, like yours, it said that I was normal for a woman my age (55). The oncologist was happy that I am ok to start Letrozole. Otherwise, I would have had some sort of bone treatment, I suppose.
I haven’t noticed any other side effects yet, other than the post-HRT ones that I have already been getting.
You can always send me a PM if we lose touch. It would be helpful to know how you are getting on with the tablets, as time goes by.
Ann xx
Hi Ann
Yes it would be good to compare notes.
Did your doctor say how often you have to have a bone scan? I assumed it would be on a pretty regular basis while we’re taking Letrozole but I forgot to ask.
I do hope you continue to be side effect free and that your post-HRT disappear. I didn’t go on HRT but I assume you are having the unpleasant menopause experiences. Not nice.
Love to you. Keep in touch
Jan xx
Hi you two,if I may push my nose in,I got my first script for Femara in May and automatically got chewable calcium tabs to strengthen my bones. Maybe it was my age(57)but there was no mention of a bone scan. Mid-July as I was nearing the end of rads,I got terible pains in shoulder,oncsregistrar got me a bone scan then and the only thing remarked upon was wear and tear,it actually saidit was a "reassuringresult". I know this is a boring post but shows that my surgeon expected Femara to weaken my bones,Ill not be going far on icy days! Bye for now love Mags x
You’re not pushing your nose in Mags and your post isn’t boring. All contributions greatfully accepted. It’s interesting that you automatically got calcium tabs. I’m 62 and haven’t been given any. I suppose it’s specialists who work differently.
It’s interesting as well that my friend who lives a few doors away and was dx at the same time as me is on Arimidex which I think is an AI the same as Letrozole and she hasn’t had a bone scan and hasn’t been given calcium and she’s got the same onc as me!!! Strange. The only difference is that my GP sorted my @etrozole out and I wonder if it was him who requested the bone scan. He’s brilliant.
I think we all have ‘wear and tear’. I used to play a huge piano accordian pre BC which messed my neck and shoulders up and it’s interesting that the main area of pain since starting Letrozole is that part of my spine and neck. Maybe it affects the weakest areas. Anyway I’m hoping I’m back to normal soon.
Do keep in touch. It helps to know how people are affected.
Love
Jan xxx