Coming off letrozole / zoladex weight loss

Hey all,

I'm really interested specifically in anyone's experience in totally coming off hormone therapy, pre-menopausal and if they noticed positive benefits from this?

I'm 38 and have been on letrozole and zoladex since my diagnosis at 36, I'm currently in remission and really considering coming off my meds, at least for a short period. I've gained over two stone in weight despite living healthier than I ever have, and the sweating it getting me down. No sex drive, knackered, mood swings...I don't want to live like this.

I've tried tamoxifen as an alternative but it was even worse, I was sweating up to 20 times a day.

I'm getting married in May after numerous cancellations and I really don't want to be a fat sweaty bride, it's giving me major anxiety for something I should be looking forward to after an awful few years.

Has anyone done this? And if so did the weight / sweats go?

Obviously I'm aware of the increased risk of the cancer coming back, but the figures are really not highly different and I also have known various women who've stayed on this treatment for YEARS and it still comes back!!

Claire xxx

 

  • Hi Claire,

    Welcome to Cancer Chat. I'm sorry to hear you've been experiencing difficulties with this. This is a very personal decision, and it's also always wise to consider advice from your doctor before changing anything. If you haven't already, do talk things through with them just to double check you have all the info and options you need.

    This topic has come up on the forum several times - so hopefully you'll receive further replies to your post soon, but if not then it might be worth searching the forum (using the button in the blue bar above) to find other relevant discussions.

    WIshing you all the best,

    Ben
    Cancer Chat Moderator

  • Hi Ben,

    I've searched extensively for this and found nothing - lots of people are having bad experiences with letrozole but I can't find anything about anyone premenopausal coming off it early.

    thanks

    claire 

  • Hi 

    Slightly related perhaps, but there is a webinar on the Kidney cancer UK website about trials and one of the trial metrics was the time people spent off drugs, either inbetween immunotherapies, or just on the "no drugs" part of the therapy schedule.  If I remember correctly, it was to see if there was a difference in outcomes between having a break from the drug and the side effects, and taking it continually.  It might have included people who had to stop the treatment because they couldn't tolerate it any more - a frequent event with kidney cancer I believe.   But it was not for the drugs you mention and it sounds like a different cancer too.  I can't find the link right now, but can dig it out?  
    Claire

  • Hi Claire

    Please can i ask - did you come off zoledex? I am having the same issues as you, gained weight during covid and treatment but despite eating better and moving more it will not come off and it mainly sits arouns my mid section making me look bloated / pregnant. 

    Although my type of Breast Cancer was not hormone related I have been on zoledex now for 18 months as a preventative.

    Hope u had a lovely wedding x

     

  •   Good ole cancer its certainly the gift that keeps giving.  Like you I have been taking Letrozole with Zoladex, on top of bone issues I did a really stupid thing today and weighed myself .  I admit I haven't been particularly active mostly due to bone pain but have been walking when I can, and use the stairs at work.  I felt rubbish today, my partner bless him said " well I'd rather you gained weight than not being here" which I do get & being realistic is true but I hate it.  Its bad enough going through 9 months of treatment but now this!  I'm sorry for ranting but I know you will understand & know that you are not alone.

    Bolly xx