Stopping Letrozole

Hi 

Oh, the infernal enigma of the Letrozole puzzle eh :-/

Don't know how long you have been on them but they come with a more varied menu of side effects than Deliveroo. J tolerated Femara for 5 years and was then offered another 5 on top - her comment 'No way Jose'  enough was enough...

If I think correctly you dodged the chemo bullet so are relying on the Letrozole to ward off any stragglers ? if this is the case have you asked about trying Exemestane/Aromasin for while instead ? to see if that is any easier to cope with regarding your recurrence risk. Some ladies who have tried Letrozole or Anastrozole found that one more do'able.

It all comes down to quality of life vs risk. Think if this was me at 62 after checking out any alternative AI's I would take my chances, who wants to feel 20 years older anyway   It's not previously having chemo that would make it a tricky decision.

Hugs, G n' J

Hi , hope you don’t mind me replying even though I haven’t chosen to stop taking my AI. I’m on anastrozole. Just wanted to ask if you’d thought of switching to a different AI? The possible side effects are all very similar I think but you might react differently to one of the others? My main issue with anastrozole is fatigue, to the extent that I haven’t managed to work full time (special needs teacher), I’m still working alternate days. Will probably have to retire early but financially it’s tricky.

Anyway just wondered if you’d thought of switching, maybe after the letrozole is out of your system. As for the research, you’ll be an important statistic as one who couldn’t tolerate the side effects. Hope you begin to feel better soon, I very much sympathise with your frustration re exercise as walking is undoubtedly my new passion and close to an addiction! HFxx

 I've not started my Letrozole yet,  but from wider reading the amount required to lower oestrogen is less than 2.5mg ( it's on the Femara data ) and some women take 1/2  tablet daily.  Again it's a judgement call,  and you'd need to do the research.  If was  me (it will be in a couple of months!) I'd try different brands and other AI's as well.  Did you have any LVI? That would certainly push me to continuing. 

Hi Happyfeet

I've come off it for 8 weeks. It takes 3 to 4 weeks to get out of my system. Then I have sort of 4 weeks to find out what my normal is. I found out I'd got BC just as I was recovering from surgery on my foot, the second foot, so I'm not entirely sure what normal is . So we will see. If there isn't a difference I'll go back onto something.

Thank you for your support.

Hi Happyfeet

I was a teacher but I'd cut down to three full days. When this started we decided Wed retire.

Hubby was also on three days so it was a bit of a no brained. There's only £200 quid a month difference in income as far as I am concerned. He gets his state pension next year. The plan was to do odd days supply but I've still got to get back into that. Too much to do at the moment.

I didn't need to retire on medical grounds so I can do supply no problem.

Dearest ,

These are early days for you, I was 'petrified' to take Letrozole, I was posting on here at the time. I take and am having various side effects - some from the tablet and some I believe are how my bodies is reacting with less oestrogen in it.  I am guessing this tablet is 'ageing our bodies' a lot quicker by getting the oestrogen out of our bodies far faster (years) than we would do naturally.

I have read the same as Londonmumof2 and also being told the same from a lovely lady on this site.  It seems that we could take a far smaller dose and still get the same effect and coverage, I believe even 'half of a tablet' will still have the same effect (now of course I am not telling anyone to take half a tablet, I am just saying this so we are aware).  

When I first went on letrozole it was whilst I was waiting on doctors to arrange my treatment.  In the few weeks this happened, the letrozole (Femera) had actually started to shrink the BC - so this little tablet does its job.  It actually 'takes away the food supply'.  

I am overweight and after menopause oestrogen is made up in 'fat cells' - so I need this tablet for as long as I can tolerate it to continue to remove the food source.  Loosing weight would help me, but with all that has gone on I know at the moment I am comfort eating (my goodness, I need some comforting).  Saying this I did loose some weight, but its seems to be all wanting to go back on again and quickly too - its a shame it doesn't come off this easy.

A few things to consider (don't answer them on here, think them through for yourself).....

If you stay off the letrozole and you have a re-occurance - how would you feel?

Have you tried Femera, the original make of letrozole, that was tried and tested first?
(Don't get me wrong, I take it with side effects, but they are 'do-able' and I do ask is it a side effect of the tablet or 'just' how my body is without so much oestrogen).  

Are you taking plenty of supplements, namely 'Glucosamine and chondroitin', Vitamin D (strong dose) - you know I can't think of the other supplements the Fruit Loops take.

Also, there is a product you make yourself (you can buy it, but better quality and cheaper if you make it yourself), it is called Golden Paste, it consists of 3 ingredients ... Turmeric, Black Pepper and Coconut oil (and water).  This is very good, depending on what other medication you are on, it would be worth asking your doctors if you could try this, it is natural and might well help you.

I hope I've given you some food for thought, plus, the side effects you have, 'if you are feeling like this due to the lack of oestrogen in your body, then you may stay with these symptoms that you might be able to mask with supplements or it might be until your body has made/produced more oestrogen that the effects will fade.  

Just before I go, I have noticed that I seem to have different side affects that can change as quick as anything, where it is food related, or weight related.... the passed few weeks I was having hot flushes on a daily basis, even a few times a day and now they have ssshhhh - well you get my message.

zzzzz I'm going my lovely. 

Nighty Night xxx