Hi Danielle,

I was prescribed Letrozole also after my diagnosis in October 2019. I was then 67. 

I never wanted to take these tablets given the horror stories so started to take them every other day. I had no side affects taking them like that but then decided after starting to get tired and slightly lie moid that I didn't want them so I don't take them now. Talked it through with the oncologist and he wasn't  that bothered one way or another. He felt the helpfulness (to me) was in any event minimal. 
 

So, I am absolutely not suggesting your mum follow my route of course (!) but I do think it's worth discussing the pros and cons through with your mums oncologist.  

On this site there are women who haven't had dreadful experiences so obviously it would be good to hear from some of them. 
 

Also some women find different brands are better than others  so that also might be something to ask about? The generic non branded Letrozole is the easiest one to get prescribed because it's cheap  There are branded ones though (Femara) that some women say are easier to tolerate but it is expensive and quite difficult (though not impossible!) to get!! 
 

I wish you all the luck in the world going forward. 
 

Taje ccare,

Kebbs 

Hi Kebbs! 

Thanks so much for your reply,

My mum has been given the bog standard letrozole, I'm sure if they do cause nasty side effects the oncologist will maybe ask the Dr to change brand? 

Thanks for sharing your experience, her oncologist did seem quite keen to have her on them, (Maybe because her grade was grade 3) but he did give alot of helpful advice such as keeping active and the cancer nurses are brilliant! 

I just thought I'd post on here to see if anybody did have any stories that wernt complete horror stories. 

Good luck to you also going forward! Let's hope this is a good year for us all. 

Danielle 

Hi Danielle [@Danalan2015]‍ 

I've been taking letrozole and having zolodex & bisphosphonate infusions since Feb 2020.  The latter 2 no side effects at all, I did initially get some with Letrozole.  For the first, maybe 3 months I moved like a zombie first thing out of bed and on an evening had sore knees when getting up from the sofa..I found that I reacted differently to different brands of letrozole, as can be the case due to the coating on the tablets (so I am told). I'm now on my third brand and have no side effects whatsoever.

There are tools (NHS predict), where your mother can, with help from support team )or do it herself online) determine, based on average experience of those who have gone before re cancer treatments, see what benefit (in terms of survival rates in 5/10/15 years) letrozole will give given your mothers diagnosis & treatment.  For me the benefits are quite significant so worth considering even if there are side effects I reckon.

There is also, on the McMillan website, a dedicated discussion threads re 'oestrogen reducing medications' under the 'breast cancer' group & 'questions about diagnosis & treatment' which your mother may find useful and can discuss with others.

Good luck 

Sam

No problems Danielle!

No issues switching brand but you may need to shop around.  I asked my Dr to state the brand I needed on prescription but then Boots effectively ignored the request (so do double check what brand you're given before leaving chemist!), I had to ring around and found a lovely independent chemists who can get the required brand.

Am grade 3 too so your Mums in good company.  Hope her rads is ok (mine was)...again there's a good discussion thread for rads & top tips on McMillan website.

Best wishes to your Mum, she's very lucky to have a curious & supportive daughter.

Sam

Hi Danielle

Not sure if this will help but you may gain something.  I was diagnosed May 2018 had Left mastectomy in late June 2018 and have been on Letrozole since 12 th July 2018, I was 66.  I , like you , read the leaflet, and was horrified at the side effects.  I spoke to my son about these tablets at the time and his words were very wise.  Any medication we take has side effects, and everyone will react differently to any type of tablet that we take for any medical condition, from the humble Asprin, to Penicillin etc.  
I have had very little side effects, I get a couple of hot flushes mainly at breakfast , which last about 2- 3 mins then may not have another one for a couple of days,  and occasionally may get one in the the evening again 2-3mins.

Joint aches occasionally but nothing to talk about really and I have found about every 3 months for a couple of days I feel tired, ( not sure if this is down to Letrozle )and that is all I have.   It is up to everyone to make their own decision on tablets, but I'm sure your Mum can always change the brand through her oncologist, remember they are there to help,  if  she feels they do not suit her. I wish you both well, stay safe. 
X