I had breast cancer removed Aug 2013.  Started on Letrozole April 2014 for a year but because of aches & pains I got moved onto Anastrozole.  At first I thought it was better, but been on it now for over 2 years & I'm crippled with joint pain, shoulders, hips, knees, particularly left leg, foot deformed, bakers cyst behind left knee.  I'd asked consultant if I could stop it.  He said no & offered Tamoxifen, I said no.  2 weeks ago I went to GP who offered me a break for a month to see if there was improvement.  So I've stopped taking it.  I value quality of life.  My bakers cyst has reduced & hot flushes have stopped!  I've been cold.  Haven't been cold in over 3 years. In 2 years by bone density has gone from above average to osteopenia of the spine.  I know someone who has been on it for 6 years without any side effects.  It must affect people who are prone to arthritis.  My cancer was the most oestrogen positive you could get, but a risk I'm prepared to take rather than suffering.  Also had the insomnia & itching, take antihystamines to control it & constipation.  But prone to the latter two anyway.

Hi Shermalt,

A very warm welcome to our forum.

I am sorry to hear about the trouble you've had with Letrozole. I took Tamoxifen for 1 year, then Letrozole for 6½ years. I had a number of side-effects. I stopped taking these in July 2017, but my joint pains have never subsided since.

Have you discussed taking a break with your consultant or nurse? It is always worth doing this first. The other thing you could do is to follow Snowdrops' advice and change to aother drug with fewer side-effects. I hope that you still have time to get this sorted before your son's wedding and that you all have a wonderful day.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hello Snowdrops and Jolamine,

Thank you both for your replies.  It really does help to share experiences.  I have been in touch with my oncologist and will see what he says.  I have slight osteoporosis now and am really keen to keep that in check so want to do something about Letrozole.  I take a lot of exercise and do specific ones set by the a physio friend every day but I don't think it is making much difference, to be honest.  I wake up very stiff in the mornings and have to work hard to get everything moving! 

Shermalt 
 

Hi Shermalt.

I also take Adcal on prescription. It's a calcium and vitamin D supplement and was prescribed as soon as chemotherapy and radiotherapy treatment ended. This could help with osteoporosis.

good luck. 

What side affects do you get when coming off Letrozole?.  I have been told it is time to stop taking it.   Quite truthfully, it scares me in case the cancer comes back.   Arianna.

Hello Shermelt,

Your symptoms might be something else entirely.  Obviously I don't know what age you are, but probably need to be checked for any form of arthritis etc.   I actually have similar symptoms to what you describe, and I have fibromyalgia, which is a chronic condition and causes pain in the muscles and stiffness in the morning and after resting etc.  There is a lot more to it.   It would be a good idea to consult a doctor and will possibly be referred to a rheumatologist, for a blood test etc.

Arianne

Hi Arianne,

A very warm welcom to our forum.

I took Tamoxifen for one year, following a lumpectomy. The following year I found a lump in the same breast and had a double mastectomy. Following this, I took Letrozole for six and a half years. I stopped taking this in July 2017. Once we have had cancer, we all have to learn to live with the fear of recurrence. I can honestly say that although I had several side-effects when taking these drugs, I had no problems coming off them. In fact, apart from the slightly increased fear of it coming back, it was a relief to stop taking them. 

My moods and my tiredness improved when I stopped, although I still get joint pains throughout my body and still have sweats and nausea. I agree that it is impossible to decide whether or not my arthritis might have been a problem irrespective of any treatment,  I am just glad to still be here 13 years on and leading a busy and fulfilling life.

Please keep in touch and let us know how you fare. We are always here for you.

Kind regards,

Jolamine xx

Hi Arianne, 

my side effects coming off Letrozole were all improvements, lack of stiffness and muscle pains. A few months later a new consultant wasn't happy that I was taking nothing and put me on Exemestane also known as Aromasin. I'm still on this so I don't have the side effects of Letrozole. It does however make my hair thinner on top. I have an appointment in June and that will be 6 years clear and it has been suggested I could stop then.

good luck. 

Hi everyone,

It is so reassuring to read your posts. I am feeling so alone and not really listened to at all. I started on Anastrozole in 2017, changed to Exemastane as my joints were bad. There was no change so I was moved to Tamoxifen, which for me seemed perfect. However, it was discovered that the Tamoxifen was thickening the lining of my uterus and I had a uterine cancer scare this year. I have been taken off Tamoxifen and am now on Letrozole. 

It's awful, worst one yet. I would struggle to do a normal supermarket shop. I ache constantly down my legs, the base of my back, hips, knees and ankles as well as my shoulders and arms. 

My onc. wants me to stay on these for the next 5 years, but I really dont think I can if I want a quality of life.

Reading your stories makes me feel so much less lonely and isolated so thank you.

J xxx

Hi Chocoholic,

Rest assured that you are by no means alone in this. All of these treatment have potential side-effects, all of which are similar. It is important to find one that you can cope with. It is a great pity that you were coping well with Tamoxifen, yet had to be taken off it. Have you tried taking your Letrozole in the eveing instead of the morning? Some people find that this helps. Others find that some brands of Letrozole work better than others, so have a word with your care team again and see what they suggest.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Everyone

I have been taking Letrozole since January 2022 and the side effects are not too bad, I take it at 8pm every evening and feel that it works a lot better in the evening. I tend to get pain across the back of the hips when getting up after sitting down for sometime, but it goes quite quickly once I move around. Keeping activity, I think is the best option,

Best Wishes

HelenaK

Hi Everyone

I have been taking Letrozole since January 2022 and the side effects are not too bad, I take it at 8pm every evening and feel that it works a lot better in the evening. I tend to get pain across the back of the hips when getting up after sitting down for sometime, but it goes quite quickly once I move around. Keeping activity, I think is the best option,

Best Wishes

HelenaK