Hi, I have been on letrozole for just over a year now. I get joint pains mainly in my knees, which are also very stiff especially if I have been sitting for a while. I also have what I can only describe as burning pain in my knees during the night. Luckily it's not every night. 

I am back at my oncologist next month so going to mention it again.

Do you have these pains too xx

Hi  I've been on letrozole since Nov,yea I'm the exact same,shoulder neck pain.i feel I'm going through the menopause 

Hi bellaboop. 

The side effects are not good but like you say do we have an alternative? When I saw my oncologist five months ago I mentioned this, but I was keen to continue very afraid not to really. I will mention it again next month. I can 'put up' with it. 

Best wishes to you x

Hi

I'm new to the forum so not sure if this is going to the right place or not yet.

I've been on Letrozole for 3 and half years after having side effects from Tamoxifen.

I wished that I had the "strength" to come off the tablets.  However in the last 3 years of my diagnosis- my Mum died of ovarian the year after and then last year my sister have pre cancerous cells.  I am so scared of the cancer coming back and never talk to anyone about it.

The side effects are really bad, I hurt all over and its deep in my bones rather than in my joints if that makes sense.

Then there is the no sex part cos I am in so much pain.  I was due my smear test (of course that was painful) So nurse tried twice - referred me to a doctor who tried - and then I was referred to hospital.  I was told to use replens cos I had severe vaginal dystrophy.

My skin is very sore - my nails are really bad.

I have got arthritis in my knees so walking is really bad and each step is a pain, but I won't give in to it.  I know my family think I need to talk to someone but I can't.  

Sorry for the moan.  xx

Re your shoulder pain, I have recently posted under "frozen shoulder" , you should read it, but mainly start exercising now, it is common in cancer survivors I was told. Don't wait until it becomes bad. I haven't slept for months until a recent steroid injection, act now before it worsens .

i have lots of side effects from letrozole too, but I had more from anastrozole. Maybe a change would help you. Don't suffer in silence, see your GP, and keep asking questions on here, it's a great support.

good luck.

I appreciate you wrote this last year but I was wondering if you made any progress? Your story sounds identical to mine. I’ve been suffering with rib, shoulder and neck pain in particular down one side since the end of my treatment 5 years ago and despite lots of investigation, there’s no explanation. It’s really affected my sleep and quality of life. Do you have any suggestions? 

I hope you’re feeling better 

x

Yes I made progress, but only through surgery I’m afraid. The steroid injection was short lived relief and I was referred to an orthopaedic surgeon for manipulation under anaesthetic and shaving a bit of bone away in February this year, but back in July for a full shoulder replacement. The shoulder pain is gone but my arms are still achy, having lots of physiotherapy and making slow progress.  I don’t take any cancer drugs at present and my leg and muscle aches are much better but like you I still suffer neck and related shoulder/arm pains. I sleep with pillows under each arm some nights, which helps. 

Ask to be referred if you can. Where we are there is a MICATS clinic, musculoskeletal integrated clinical assessment ,which begins with physio but if you can stress the investigations you have already had you could see a senior person who can refer you on. The therapist I saw told me it was very common after radiotherapy, he has written papers on it , he was very straightforward about it. This is all NHS by the way. 

I have occasionally paid for a neck and shoulder massage which helps sometimes if you find someone experienced, I tried electrical acupuncture with massage but wasn’t impressed, it may work for you.

Dont give up, keep pushing for help until you find someone who listens properly. I feel your frustration and lack of sleep but there doesn’t seem to be an easy answer, it doesn’t seem fair to have this after coming through everything else I know.

I hope I’ve helped a little.

Hi BellaBoop

I have had the Opposite was on Tamoxifen for 6 years and it was hell no sleep shakes and sweats.

I am on a 10 year plan and the doctors said I could not come of them so I said I would stop altogether so they changed it to Letrozole. It is great I am not sweating all night so getting some sleep and not shacking at work helps to. Ask to change it should be what works for individuals.

Hope you get this sorted as it makes live very difficult.

Avis

I started with Anastrozole, then Letrozole, and finally Tamoxifen and had problems with all three, can’t bear to think of 10 years like this. Now I don’t take anything. My consultant moved on to another hospital and the locum didn’t push for me to take anything else. 

Have an appointment in December so will see what happens but a lot of my pains have gone though not all.