Side effects of temporarily (?) stopping Letrozole

Hi London mum

Have you asked what difference will taking letrozole will make to your survival rate? Mine was 2% I'm sure, but you pays your money and takes your choice, that sort of difference was not worth the side effects.

What did Mae West say" Its not the man in my life, it's the life in my man"

I hope eyes get sorted without too many issues.

Hiya,

Just thought I would add to this. I had my eyes tested in January. The optician told me I had the beginnings of macular degeneration which she said was surprising in someone of my age (47). It turns out that it is linked to letrozole which I have been taking for nearly three years. It is also liked to the other AIs and also tamoxifen. 

As hormone therapy gives me a 13% benefit, I do not really want to stop taking it. I will now have yearly eye tests to monitor it.

Cwtches,

Gay xxx

For me it's 4% at 10 years.  I have a 1/10.5 chance of death without it and a 1/17 chance if death with it.  I think that makes it worthwhile,  but I'm worried about my health.  It's hard to know if my eyes were in a bad state after the chemo when I had pink eyes at night throughout EC, the Zoledronic acid,  also pink eyed for several days,  the letrozole, or a build up of it all. Hopefully a short break will show if I need to try a different AI or tamoxifen, if I start to feel better off this.  I've not asked to come off,  but feel I need a break to see where I am, and give my eye a chance to start recovering. I'll speak to my oncologist when I see her in 9 days. 

How are you feeling now you've stopped?

Hiya,

I haven't stopped. I have another 7 and a bit years to go. I had my dx aged 43 with 14/18 nodes positive. I want to do all that I can to prevent a recurrence.

I am going to see what happens to my eyes in the next few years. I have read that macular degeneration can lead to registered blindness within 10 years, which scared me a bit. I also had the beginnings of osteopenia in my spine at my last dexa scan 2 years ago. I have just had an appointment for my next dexa scan this morning. so I will have to wait and see the results for that. If the osteopenia has worsened, I am going to push for bisphosphonates which my onc told me 2 years ago that I couldn't have, not available to me in Wales at that time.

Day to day I am absolutely fine on letrozole. I had a few hot flushes, achy joints - yep walking like a 90 year old, to begin with, but not really anymore - my body must be used to it.

Cwtches,

Gay xxx 

Hi Londonmumof2,

My eyes have deteriorated over the past few weeks, I have worn glasses for reading for years but I couldn't work out why the deterioration and eyes feeling so tired, never thought about Femara/Letrozole but after reading this discussion I'm now wondering, is it connected. I have an Eye Test booked for Tuesday.

It is scary stuff when you have side effects affecting your head and you feel wobbly, who really knows the side affects of these meds we take, after all we are all individuals and our bodies react differently to stuff. I do hope you are feeling better. 

Hi Wombat,

Macular Degeneration is quite common in older people, when I was working a lot of my clients had it, Hubby has it and is now partially sighted about 7 years after being diagnosed with Macular Degen.

You are quite young in your 40's to have it.  

Hello Londonmumof2,

Your post makes interesting reading and thoughts.  My eyes have had floaters for many, many years - I can remember as a child looking at the clouds and noticing 'things' moving in my eyes, I would watch them and blink and they would move back and then move about again - at this time I didn't know they were floaters and I never said anything about them.

Since taking letrozole I have always complained that the light isn't bright enough to do my paperwork, to the point of arguing with my hubby that his garage lights are brighter than ours in the house. Many times I have said 'I wish you could see how I see'.... never once thinking letrozole could be part of the problem - I also seem to have more floaters than ever.  Your post is prompting me to book a long overdue eye test - "Thank You" for this.

In the past (before letrozole) I have had the wavy lines/flashing lights in the corner of my eye - I was told these can be 'silent migrants' - however these should not go un-checked in case it could be something more serious.

I think you definitely did the right going to Moorfields Eye Hospital - this is a renown hospital and the best place for eye problems.  If you think about this regardless of what your oncologist or doctors say - the best place and people to listen to are the eye hospital specialists (the others may still offer to send you there, but this way you are one step in front - your eyes are so precious and you don't want to wait if you can avoid this).  

Thankfully you have gone there and they have given you a diagnosis and you will see a specialist all of this is the best treatment possible.  

I really pray that your legs start to feel better and become part of you again, the trouble is there are so many others things going around at the moment, here chicken pox and shingles are rife - so we are trying hard to avoid anyone and everyone (not easy when Mom just wants to get out the house and go shopping). Even colds can throw up odd symptoms - all so strange. 

I am sure I read that you are a 'good clean eater' - I was going to say, I have stopped eating bread (well cut it out at for the last 5 weeks or so) and I can honestly say I do feel a lot better since I have stopped eating bread - aches seem less and flushes are less (not to mention blood sugars lower) - when I am hungry I crave it, once I've eat that feeling goes. (just a thought to you or anyone with the aches especially in the fingers).

Before I go, I have read on here that ladies are taking Clarityn (brand name) of Loratadine to ease a lot of aches and pains, I've not tried this yet, but keep thinking about it - I believe there are some other benefits but can't remember now (it would be good if it helped with the memory hahaha).

Sorry I've waffled, I pray your eyes start to heal and I hope you find answers soon.

Lots of love xx

Hi Londonmum,

What a coincidence !  I had a Posterior Vitreous Detachment happen to me about 3 weeks ago (I've been on Letrozole for 5 years now). Like you I had a large spidery floater suddenly appear in vision in one eye, and lots of tiny grey spots which are apparently from a burst blood vessel.

I'd never heard of it before but apparently it happens to all of us as we get older - something to do with a change in structure of the jelly in the back of the eye so it comes away from the retina. Some people are lucky and it detaches without floaters or burst blood vessels so they don't notice it.

I phoned 111 who sent me to A&E where they checked that there was no retinal detachment (curtain across vision etc) which is an emergency. They gave me an appt with the Eye dept the next day who did a thorough examination and diagnosed the PVD. The specialist said that due to the blood from the burst vessel they could not check for retinal tears, so they asked me to go back 2 weeks later when the blood had cleared a bit. I went back this week and they said that they can now see that there is no damage to the retina. The grey spots have mostly disappeared from my vision but I still have the annoying floater - they said that it should become less noticeable over the next few months.

I've been told to go back immediately if I notice any shadowy curtain in vision, or fireworks in vision, or lots of new floaters as these could indicate a retinal detachment which requires immediate treatment.

They didn't suggest any link between Letrozole and PVD, and as PVD happens to all of us as we get older it probably would have happened anyway.

...and apparently once its happened in one eye it will probably happen in the other one fairly soon ! Hopefully we'll be lucky next time and not get the floaters and burst blood vessel.

Sorry to hear about your other symptoms - I've been lucky and not had much problem with Letrozole other than a few weeks with trigger thumb. Hope you get them diagnosed/resolved soon.

Best wishes,

Nic

Hi peterawake

Yes that is what the optician said that it is common in older people. I am quite concerned because my dad was certified as blind before he died as he developed glaucoma after a stroke. 

Feel a bit torn as I feel like I need to keep on taking letrozole, but worried about this current development. 

Cwtches, 

Gay  Xxx

Hi scared_2 I read this week that there is oestrogen in thr gel,  and it helps keep the eye healthy.  No one in my family on either side have had eye problems apart from my uncle who developed glaucoma in his 90's, and had surgery. My mum eased 97 when she died and her eyes were fine  this was film an article I found and shows the improvement in one woman's eyes a month after letrozole (though all AI's can do this) i hope that this spidey blood goes and thr tint dots too. It's really straining my other eye! I've typed thr side effect to the yellow card scheme. X