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.

Hello Jolamine...

Thank you for your reply, please don't be sorry, nice of you to ask...

The eye thing is like a physical feeling of something being caught on something... really weird....I feel like if I could put scissors under my eyeball and snip it would go.... it's like when I look up the lower part of my eye is attached to something it shouldn't be... that's the best I can do for explaining...

The Dr today said he could only tell me if my eyes are good or bad... not necessarily what is causing another problem. He said I do not need to see an optician for two years.... there is nothing wrong ... this is just frustrating....but because of the MRI scan I do kind of feel better. 

Don't know where to turn with it so just gonna leave it for now. Maybe I've reached a point where this is as good as it gets... weird vision, painful left hip and left knee... general joint arthralgia... still too scared to stop the Letrozole....so I think I'll just shut up moaning and plod on.....from the things I've read I really could be in a worse situation with my prognosis.

How are you??

X

Hi MilosMum,

I am a lot better now that I am no longer taking Letrozole, although I still suffer with some of the side-effects. Still, I'm glad that I perservered with it, because I feel that I have done all that I can to keep the cancer at bay.

Like you, I feel that I could be a lot worse off and, I'm grateful to still be here 12years after my first diagnosis.

Kind regards,

Jolamine xx

Hello,

I have been on Letrozole for two years and have the same joint pains and aches as so many people report.  I am thinking of taking a Letrozole,holiday around my son's wedding.  I'd be interested to hear from anyone who has taken a holiday and to know how long for and how long before symptoms improved...if they did. 
 

Shermalt

Hi, 

I posted in April 2017 about this , it may help you. Briefly at the end of my tether I just stopped and within a a week I felt so much better. A locum consultant just left it at that, but 5 months later a new consultant put me on Aromasin, also called Exemestane and the side effects are nothing like as bad. I still take it so that says something. I think it was quite new then. 

you don't have to suffer in silence, ask for a change and push for it. We are all different and affected in different ways so a different medication may well suit you better. I have had 4 different meds and letrozole was by far the worst, I am hoping to stop altogether next year. 
good luck, enjoy the wedding.

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,

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