I have been on letrozole for a mere 10 days and have painful carpal tunnel syndrome in left hand already. Oncology registrar advised seeing my gp. I will be talking to my main oncologist (I hope it will be her) later in June as well.
My question is have others experienced this with letrozole and can it go away as your body adjusts to letrozole? Or am I stuck with it if I stick with letrozole?
I already have a wrist brace to manage the pain in the mornings. Am nervous about it happening to right hand too as my work and life are very “hands” oriented (editing, writing and art).
Dear @Kara, I am sorry to hear you are suffering with Carpal tunnel syndrome. I also developed this on Letrozole and was also directed to my GP. I stopped Letrozole after 11 months in October 2024. The carpal tunnel syndrome has never gone away. I too use a hand splint at night.
I recommend recording this side effect via the Yellow card scheme. The more times it is reported the higher up the list of side effects it will go and the more seriously it will be taken.
@Tulip29 my (very basic) understanding is that there is a surgical option .. is this something available to you, since you’ve been off letrazole so long?
Hi @Kara , to answer your questions..as its was not my only side effect I chose to stay off the hormone therapy completely. The AI stimulated my pituitary gland to produce fsh which increased my gynae estrogen causing an existing fibroid to grow, a new fibroid to appear and an ovarian cyst to develop. My cholesterol rose and blood glucose control deteriorated. As a type 1 diabetic I had to consider the long term damage of type 1 diabetes v the risk of breast cancer recurrence. I couldn’t consider Tamoxifen with fibroids and was reluctant to risk exemestane due to the steroid carrier (steroid raises blood sugar). It was a hard decision but I had to prioritise actual ham v potential harm.
Re the Carpal tunnel it is not as painful as it used to be two years ago. Now the triangle between my thumb and first finger feels numb with occasional sensations like electric shocks. I also did the recommended had exercises initially which helped.
The hand exercises were included in a patient information leaflet published by East Sussex Healthcare NHS trust that I found online.
I’ve been on Letrozole for 2.5 years. I have been having sentitive Achilles tendons, mostly on one leg with occasional tendonitis symptoms. The referral to physio took a while, but I now see one and have daily exercises to follow. It’s not getting worse, but is not healed yet either.
Sorry to hear about your carpal tunnel syndrome situation. Defenitly report it as a side effect via the Yellow card scheme, and seek medical help. Wishing you all the best with the recovery.
Hello Lara…I’ve only just seen your post about carpal tunnel. I was taking Letrozole in May and June for nearly 8 weeks. The general aches and pains were becoming unbearable so I stopped taking it. I’d tried to make contact with my surgeon but kept getting fobbed off by his secretary. So I decided to stop anyway! Since then, pains have become worse, including CT with my thumb and first 2 fingers on my left hand being numb and sore.
My situation is further complicated by having just finished steroids for polymyalgia rheumatica, and a lot of these pains are very similar. I’ve also been exposed to Lyme disease in the past due to tick bites. I’ve had another 8 to 10 ticks this year!! Both conditions lead to aches and pains…talk about triple whammy!!
In desperation I’m seeing my GP this afternoon to see if the polymyalgia has been reactivated by the letrozole and if the ticks have been infected with Lyme!
Grrrr…if only I’d pushed for Tamoxifen instead I don’t think I’d be so bloody crippled. I’m only 77 and three quarters!!!
I’m rather alarmed by reports on this thread that once you’ve got CT it doesn’t go away, even though looking at relevant websites, it is said to get better once medication is stopped. Going by you ladies, it doesn’t. Double grrrrr…
I’ll try and find this thread again and report back after seeing the GP.
Best wishes to all you amazing women and what you have had to put up with. xx
Hiya, no worries, my forum usage has dwindled while deali g with other life stuff like housing issues haha!
I still have carpal tunnel but my GP said I can have injections and even surgery to manage if needed. I double checked with oncologist that this could be done if needed on surgery side. She assured me yes, they do have to acknowledge the lymphodema risk but she seemed to feel it was entirely appropriate if necessary. I will start by requesting injections for left side and see if I tolerate. Wrist braces have been brilliant and to be honest I have adapted.
I am so so sorry you feel fobbed off. I thought they were required to monitor letrozole stuff?! I am now on ribociclib too so am being strictly monitored and even been told I can still use the 24 hour chemo Iine for any ribo potential side effects.
Do tell your GP all of it, definitely!
I am 46 and my type and stage of cancer, without treatment, gave me a 26% survival rate in 10 years, doing all this has raised this to 54% so I am doing all of it doggedly I admit.
I lived with chronic pain prior to cancer. Oddly this has worked in my favour in terms of knowing how to cope. Although it also has the downside of me not acting on things that can be relieved /sorted… working on that.
Gosh Kara, I’m sorry you’re so young to have had BC…I was 55 when I had it first, radiotherapy and Tamoxifen with no real ill effects. This time - considered a new lump rather than a recurrence after 24 years - very different.
I do have a BC nurse but not overly impressed. I think I’m just at a very cross stage, angry at going from a perfectly fit, largely pain free 77 year old, to being in constant discomfort or pain! The more so as I emphasised that at my age, what were the chances of it coming back after surgery…if I didn’t take any medication. I said quality of life over longevity was my aim. If I get 10 years, I’ll be knocking on 90…if I get 20 plus like last time, I’ll be 100 plus!
I just feel tricked into taking letrozole over Tamoxifen and cross with all the side effects. Take painkillers they say. Great, that causes constipation and I’ve got a slow transit as it is. Take laxatives they say…great! So for a very small extension of life I then have to take a whole lot of pills…not to mention osteoporosis, raised blood pressure, raised cholesterol and pills for all of those!!!
Sorry to moan on, as you have it far worse. But I’d be horrified if the carpal tunnel needs surgery and wearing wrist splints in this heat is unconscionable!! xx
