Letrozole

Hi all,

I hope today is a good day for you all xxx 

first  time posting..brief history.. 2 years ago early stage breast cancer found by lump. Lumpectomy and radiotherapy. Tamoxifen. Came off that to have ovaries removed (long story there!). So now on leterozole.

side effects appear to be hideous. I waited until I knew the affects of ovary removal (menopause) had settled a bit before taking them but oh my they have increased the symptoms ten fold. Pain in my hands and feet, anxiety, insomnia, and very very tearful. I almost wake up crying. Weight gain through the roof. I just want to close the door and people leave me alone but I also want to be out there enjoying my life. 
Anyway, from the predict test and the other one they use to gauge risk of recurrence, my risk is very very low. I'm wondering if it's worth taking these pills or not, which seems a silly thing to say if they are giving me life, but at the moment they are not! 
do the side effects subside a little after a while, I said to my husband only last night that I'm giving them until Feb as that would be 3 months.. but I've woken up crying and not sure I can do it. 
Anyone out there who have overcome the hell lf these pills and have some positive stuff to share.. please!

many thanks in advance

Hx 

  • Hello, I'm so sorry your having problems....I think you definitely need to chat to your doctor about Changing the meds, I'm on anastrozole ( similar) and fingers crossed I'm tolerating it really well. Been on them now for almost 6 months. Don't suffer in silence. I remember my onco saying ( when he first prescribed them) to give them 3 months to settle in, if I experienced severe side effects to stop for a couple of weeks, if side effects went away then he could prescribe something else. 

    Good luck and don't suffer in silence.....

  • Thankyou so much for your response Marlyn. I will email my nurse today and get an appointment. 
    thankyou, 

    Happy new year to you, 

    Hx 

  • Hi, I have been on Letrozole for only 10 weeks and getting joint pains, stomachache, nausea and various other side effects. My oncologist said to come off them for two weeks to see if they go and they can prescribe something else if they do. I have been off them for 10 days but still feeling awful so not sure if my body is just messed up from the chemo and radiotherapy. I am ringing the breast nurse at the end of the week to see where we go from here. Good idea to speak to your nurse for advice sooner rather than later. Good luck. X

  • Hi Denmac

    Thankyou so much for your reply. Sorry to hear you having issues though too. I hadn't put my constant feeling sick and tummy upsets down to the tablets, thought it was the gin!! 
    I will contact the nurses,  Thankyou. Best of luck with your appointments xxx

    love and hugs

    Hx 

  • Hello

    Im new on here but I've just read your post and wanted to let you know my experience in the hope it may help. 
    I've now been on letrozole for 21 weeks after a mastectomy in June and the first 3 months were really tough. I had fatigue and awful joint pain but much worse was the anxiety and mood swings. I felt like a different person but I did continue and around 14 weeks felt a lot better. I did get some stomach pain like a burning but I was on a different brand (accord) which doesn't suit me. I have found that I don't get stomach pain with teva brand but also I can't drink alcohol very much. I was never a big drinker but I don't seem to enjoy it as much anymore as it makes me feel a bit sick. The other thing I've noticed is that over Christmas my joint pain and night sweats have increased and I'm wondering whether it's due to diet as I've eaten a lot more sweet foods. I actually lost weight on letrozole as my appetite decreased but I know that it can also cause weight gain. 
    I would definitely see if you can try another brand of letrozole as this may help you . Good luck with your treatment. Xx

  • Hi Kalis,

    Thankyou so much for taking the time to reply. I hope you are recovering well from your surgery?

    After Reading this I have considered wether the change in brand (last 2 weeks) could be what is making things worse, as I was okay when I first started taking leterozole  but it was a different brand. So that's really interesting, as I thought it was just the time it took for the side effects to start happening.  Thankyou. Also the diet consideration, that's really helpful too. I'm sitting here now and I just feel so very sick, and I haven't taken a pill for the last three days. Aaagh it's all so confusing and what to do for the best, but i do know I can't go back on them with the way they made me feel mentally and physically. 
    hopefully i will get an appointment with the nurses soon.

    Take care and keep smiling, Thankyou

    Hx 

  • Hi again H,

    I was reading some time ago about the side effects of letrozole and it appears that it is the compound that binds the active ingredient together which differs from brand to brand. I suppose in some ways that's good because hopefully most people will find something that suits them. 
    As the team have advised aromatase inhibitors eg letrozole or similar it's so important that you are taking something. I was oestrogen positive and it was a huge shock as there was no family history and it was picked up by a routine mammogram. 
    I'm recovering well from surgery thanks. My chest wall seems to be coming back to life which is a tad painful at times but manageable. My brain appears to be switching back on too!! Not sure if it was the shock or the meds but things are finally starting to return to the new normal. I only needed surgery but it sounds like you had a really rough time. Please talk to someone about your meds so that you get the best treatment possible. 
    I definitely find that alcohol makes me feel sick and also just as an afterthought I found taking my meds in the evening also helps . Please let me know how you get on 

    K xx

  • Hi Haybeans,

    It is well worth looking into a change to a different brand of Letrozole. I was at my wits end with the aches and pains after taking it for 18 months. Then by chance one month I was given a different brand, Cipla, and saw a huge improvement. I've had trouble getting the Cipla brand from my regular pharmacy and have had to switch to a different pharmacy who stock Cipla as standard. I still have some aches and pains but they are so much more bearable and I can now power my legs up stairs again. Now to tackle my weight problem!

    I do hope you and your doctor can find a solution to your problems with Letrozole and life gets easier for you xx

  • Hi. I am having the same problems. I had early stage breast cancer 9 months ago. (HER2 positive) which is aggressive. I had 3 months chemo, 9 months of herceptin and letrozole. I cry easy. I have pain that moves around my body, some days it's evil.  At the moment it's in my left shoulder, arm, hand, fingers and knee. It wakes me up quite a lot. I have low mood and can snap easy. I am seeing my consultant on the 20th January. I have heard that there was a trial done on letrole where you take for 9 months and have 3 months off. Apparently, this gives a better quality of life and the outcome is the same. My hair. It used to be blonde straight and hung to my shoulders - my pride and joy. It is now a fluffy colourless mess that stands on end; this is not helping my low mood. I can't remember the last time I felt happy. I try. Sorry to moan.

    All the best to everyone out there.

  • Hi Patsy2020

    Thankyou for getting in touch. Sounds like you are having a rough time of it. I'm glad you are back at the consultants soon. I came off the leterozole, I just couldn't do it. Still pain in places but feeling better in myself. 
    I also highly recommend counselling or something. I have literally got back in from a session, poured it all out, and now feel mentally in a better place. Also, go and do something that used to make you feel good, and go for a pamper of you can. Treat yourself..you most def deserve it. 
    It's easy, when we feel so rubbish, to forget how far we have come and the battle we have had already, physically and mentally. Go easy on yourself. 
    lots of love and hugs, please let us know how you got on xxx

    H xxxx