Hi Lise,  I have also had breast cancer twice but in different breasts.  The first time was 25 years ago and required only a lumpectomy and radiotherapy.  The second time was in the other breast and I had chemo, radiotherapy, infusions 6 monthly of zoledronic acid, and letrozole.  I've been taking letrozole for about 11 months and seemed fine at first.  In the last few weeks I have been experiencing muscle weakness in my legs, and arms a bit, and also more hot flushes and general feelings of being unwell.  I am wondering if these could be the result of the letrozole so am leaving them off for 7 days.  I also have an added complication of fat necrosis as a result of the surgery and radiotherapy and am wondering too if this is contributing to my syptoms.

Louise

What brand  are you on?

I am currently struggling with my joints stiffness and pain, I am trying  a different  brand, Manx, was on Accord. I'm only 1 week in so can't see any difference  yet. 

Maybe  you should  try a different brand 

Hi All,

I am sorry to hear about the side-effects you are all experiencing. It usually takes a few weeks for this medication to kick in, so stopping for a week doesn't tell us much. Stopping for too long can give cancer it's reins. If you are having problems, please discuss this with your care team.

I have also had two bouts of breast cancer. The first bout was 11 years ago, when I had a lumpectomy, followed by Tamoxifen. A year later I discovered a second cancer in the same breast and had a double mastectomy, followed by 6½ years of Letrozole. We all react differently to these drugs. I found Tamoxifen played havoc with my emotions and caused horrendous sweats, even though I was post-menopausal at the time. The joint pain was nothing in comparison to that experienced with Letrozole. I stopped taking this in July 2017.

All hormone therapy can carry side-effects, but think of what it is doing in exchange for this. What better exhange than saving our lives? I had a host of side-effects with both medications and had to have both knees replaced and 7 eye operations as a result, but I am still here 11 years on and leading a busy and fulfilled life.

I found that Femara was the best brand of Letrozole for me to take. There are medications available to combat many of the sweats and other side-effects, so please chat with your care team before just stopping.

I hope that you all manage to find solutions to your individual problems.

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

Kind regards,

Jolamine xx

Good evening....

I've been following discussions on Letrozole... I've been taking it for eight months now and while I can tolerate the flushes and the joint stiffness I'm struggling to deal with the eye changes.

My right eye feels like it somehow sticks. I now have glasses for blurred distance vision.

Had two very long eye tests at Boots...the second with the head optometrist and they could find nothing wrong.... please may I ask what kind of eye problems you had that led to 11 operations?

Hope I'm not being too cheeky.

Regards

Yvette

Hello MilosMum,

I am more than happy to tell you about my eye problems, although I have only had 7 operations so far and not 11. I have always been short sighted and have worn glasses since aged 2. In my teens I moved on to hard contact lenses and coped well with these for 10 years. My sight then started to become blurred. This was attributed to lack of oxygen to the eye as a result of wearing hard lenses. I stopped wearing these and wore my glasses for several years. I was later advised that I could maybe start wearing soft lens and tried these out without success.

This all happened in my thirties/fourties and I had no further problems until I started taking Letrozole in my sixties. My sight became blurred again and I started to see an increasing number of floaters. I was diagnosed with catarracts. I had two operations for these. At the time, my surgeon said that he could adjust the astygmatism which I had also had since birth.

At first all seemed ok, but then my sight became worse and I discovered that they were 25° out in the way they had placed the lens. I had a further operation to correct this. Two years later I developed posterior capsule opacification’ (PCO). This is a  catarract complication. I lost the sight almost completely in one eye and was fast losing it in the other. I had to wait just over a year for more surgery. This was a frightening stage where I relied heavily on a low vision lit magnifier to see anything at all. I had to stop work, sewing and driving. As you can imagine, this had a pretty drastic effect on my life.

I then had a further two laser operations to correct this and could see almost immediately. I regained 20/20 vision and was able to drive again and even got back to work. Since then I attend the hospital every 3 months to get my eye pressures checked and the results have varied considerably. I now have problems with eye pressures that are dangerously high and I am awaiting further surgery to both eyes to try and reduce this. It is now nearly 4 years since I started taking Letrozole, but it has left me with a few legacies.

Can I ask what age you are, as this can cause our eyesight to change too?

Sorry for the long diatribe.

Kind regards,

Jolamine xx

Hi, 

I read your reply almost immediately but had that much going on that I haven't found time to reply...thank you for your detailed reply

I'm 49...never had any eye problems before....my right eye is struggling to focus and feels like its dragging.  I first noticed it feeling different on 9th Feb.  I've had two thorough eye tests (Feb and March)....and they found nothing  I then found out I could book myself in for an OCT scan...I went last week really expecting them to find some kind of lump or something...anything..but nothing.  He said my eyes are fine and healthy..optical nerve, retina, no cataracts, pressure fine..everything fine.  It's like taking your car to the garage when you know something is wrong and they give it you back cos they can't find anything...so frustrating.

He has referred me to the eye hospital for an urgent appointment. I'm about to go into hospital for ovaries to be removed ...I wanted to find out if the eye thing is anything serious that needs my attention before I deal with having an operation which can be postponed. 

I've also managed to refer myself for a head/brain and neck MRI which is on 3rd June and my surgery date came through yesterday and it's 8th June! ...It's going to be a busyfew days!  The thing is I was kind of hoping the problem is either: chemically induced exaggerated menopause /Letrozole side effects / chemo cell damage (as sugested by optician)...but it feels very physical to me..like something is pulling  therefore I've decided it's eye/brain secondary and I'm struggling to get away from that.

Hopefully I'll get some answers very soon....I have no loss of vision and my eyes do feel quite dry sometimes.  They told me to use hot compresses as the glands can get blocked too..Fingers crossed that it isn't serious.

Best wishes x

Hi MilosMum,

There is never any hurry to respond to my posts. I know just how frustrating it is when you feel that you have something which is not being identified. However, you have done well to arrange all these other tests and your MRI should certainly show something if there is anything untoward present. I sincerely hope that you are overthinking this, as so many of us do and that there is no sign of secondary cancer.

You mention that you have dry eyes. I found that my eyes felt similar to what you're describing, but I was given cream to apply to my eyes to overcome the dryness and this was a great help. It sounds as if you have more than enough to contend with at the moment, so I sincerely hope that this is nothing serious.

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

Kind regards

Jolamine xx

Hiya Sailinglass....

Just read your post.... I've been on a similar journey...too scared to take a Letrozole break though....pleased to know however that the immense shoulder pain is just down to that pesky tablet....

I had lumpectomy in March 20 and radiotherapy in sept... started Letrozole in September..

Pain in left joints only.... for ages plus eyesight probs that started Feb 21.

Hope you are well going forwards.x

Hi, I too suffer with Letrozole. Sore sticky mucus filled eyes which stick together in the mouth making me feel blind first thing in the morning until I have used a hot flannel on each eye or allowed the shower to pummel them. 
Legs , ache, swollen ankles Itch all over, every orifice is sore . Inside nostrils , mouth etc.
BUT I believe they are helping to keep my stage 4 bone cancer static. Whilst the scans are showing the cancer remains the same I will keep to the medication my oncologist has recommended. Palbociclib, a targeted drug and Letrazole. 
my life is in their hands and it's been extended 2 years already. 
Good luck with Letrozole and if it does get too bad for you  ask if you can transfer to Anastrozole which is similar ( still has side effects) but different ones.