Undergoing treatment: Hormone therapy

Hi

I have had surgery for invasive breast cancer (luckily only invasive very locally so surgery should have it all removed. No spread found in sentinal nodes).
Had 15 radiotherapy sessions and finished over 5 weeks ago. Heat rash real problem for 5 weeks but nearly resolved now. I’m 52.
On AI Letrozole for 8 weeks now. 4 years and 10 months still to go!!
Not sure what my side effects are caused by though: tiredness, easily exhausted, weaker muscles, worsening of previously diagnosed osteoathritis in neck and lower back which is NOT responding to stretch exercises like it did pre cancer treatment, joint pains in new places when tired or walked more than 2 miles, hot flushes, night sweats, and very dry skin.
Many of these effects are advanced deep menopause but not sure about the worsening joint pains, now chronic back pain (wakes me up every night now) and muscle weakness?
Periods of low mood, but this is probably due to my physical state, and lack of any extended family support rather than any drug side effect.
GP has put me on low dose anti depressant, one of the old fashioned ones-a tricyclic- Nortriptyline 10mg to see if it helps with the joint pains at night. Sometimes i am a little less stiff in the mornings for a few hours.
I’ve got a sitting down job mainly but keep moving and getting off my butt as much as possible,m also always go out for walk every lunchtime rain or shine!
Sure i am not the only one with these side effects!!
Tried changing brand of Letrozole-not sure yet if it has made difference though.
Would be good to hear of people’s experiences of Letrozole too.
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Hi Zotto and welcome to the BCC forums where I am sure your fellow users will be along soon with support and shared experiences

Our helpliners are also on hand with support and a listening ear on 0808 800 6000 and lines are open 9-5 during the week and 10-2 Saturdays so please feel free to call to talk any concerns through

I am posting a link to the ‘Treatments’ section of the website where you will find information about Letrozole and side effects which other people have experienced:

Take care

Lucy

Hello Zotto
I have been on Letrozole for 4 years after 5 years of Tamoxifen, only 1 year to go and counting.
I am also on Nortriptyline for Burning Mouth Syndrome which raised its ulgy head about 6 months after starting Letrozole, it seems that it is due to lack of oestrogen which shows I suppose that the drug is working. It is only now that I am getting real problems with aches and pains BUT I am probably the exception to the rule so you will get other replies I’m sure.
I have tried various makes and found that Teva is best and after comparing the various makes think it is in the coating that could cause the variations in side effects. If you can persuade your GP to prescribe Femara, the original Letrozole which I think is the best one you might see a difference.
Hazel

Hi zotto
I will have been on letrozole for a year in April and suffer greatly with joint ache and pains, the pain in my ribs gets very bad especially at night, scans have shown nothing sinister so onc believes it to be the letrozole, trying to stay with it as tamoxifan did not work for me. I have monthly physio which helps and plan my day around how I feel.
Hazelmary, I am quite interested in your burning mouth syndrome as for the past few weeks I have had a burning feeling in my hands, it feels like I have rubber bands on my wrists and my hands feel swollen and ache and burn, it is so bad on a night that I can’t sleep and end up in tears is this a recognised side effect and could I get help for it? at the moment I take paracetamol through the day and codine at night.

Milo,
I started with a dry mouth and sores at the side of my mouth, then sore tongue and lips that feel like they have been burnt and inside of mouth looks normal but feel like there are ulcers there, this started about 6 months after starting Letrozole.
I thought it was candida but after taking a break from Letrozole to see if my mouth got better and didn’t improve that much I was referred to an Oral clinic where I was told that one in three postmenopausal women get BMS(first I have heard) so put on Nortriptyline, had various mouth washes/spray for dry mouth. There is no cure but it can go away eventually. Ice cubes help and chewing raw ginger. I found info on the web that this is due to low oestrogen which I guess is the job Letrozole is doing.
My Onc doesn’t really want to know about side effects other than the aches and pains so my GP and I have been working together to find ways of dealing with it.
I will have completed 10 years of hormone treatment next year and do not want anymore for a while after that.
Hazel

hazelmary,
Thank you for that, I am going to see my GP on thurs to sort it out hopefully. I am getting fed with the constant pain and trying not to ‘bother’ the proffesionals!!!

A quick update, GP thinks ache/burning in hands is a side effect of letrozole and possible nerve damage from the lymph node clearance and mx, he has prescribed Gabapentin which can be used for peripheral neuropathic pain, I have to give it 6-8 weeks to see if symptons improve. the brand of letrozole which gives me the least problems is ‘accord’

Yes Gabapentin is also an option of treatment for Burning Mouth Syndrome but we have gone down the road of Nortriptyline. I’m hoping that after I have completed 5 years of Letrozole this horrible side effect will go away.