Stopped taking Letrozole for 2 weeks advice please very worried

FormerMember
FormerMember
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I have been taking Letrozole since I finished chemo in September 2016, my SE were not too bad but they are getting worse. I have pains in my joints, shoulders, arms, legs and breasts, and a clicking thumb. I went to my GP to ask if I could change Brands,  but she said it will make no difference and has ordered a blood test, she is then going to contact my oncologist. I rang my oncologist and spoke to a macmillan nurse who advised me to stop taking Letrozole  for 2 weeks to see if it's that causing the problems. I am very nervous about stopping and would welcome your advice and if anyone has been asked to do the same.

Many thanks

  • Hi,, i have had a couple of breaks off it for a 2 or 3 week period, which you can do, the drug is accumulative so it stays in your system for a while..  your clicking thumb is normal, some get it some dont, i had it, and its been gone now for some months,, it just takes time for your body to get rid of all the stuff its been given..  joint wise, you need to speak and see your oncologist not your GP,,  they will change you onto a brand if you are really suffering, but you will get some joint pain on any of them, but it should be bearable and allow you to function,  but you will need to try brands for about a month or so to see if any are better for you.. hope it goes well  Sally xxx

  • FormerMember
    FormerMember in reply to kargus

    Thanks Sally for your input, the macmillan nurse said to call back after 2 week break

     and she will speak to the onco. It's  very difficult to get any appointments with the unit as they are very busy, but I will ask.

    Thanks once again 

    S x

  • FormerMember
    FormerMember

    Hi S,

    If you find the side effects ease within the two weeks they may try you on Anastrozole or even Exemstane. They both do the same job but Anastrozole is the more similar tablet so could well have similar side effects -

    You could ask about the Exemestane which I think are steroid based ?

    G n' J

  • FormerMember
    FormerMember in reply to FormerMember

    Thanks for the information, I have put on a lot of weight as well, would the Exemestane which could be steroid based make this worse.

    Many thanks

    Sonia x

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Sonia,

    I'm uncertain if any Exemestane would make this worse, perhaps anyone else here taking Exemstane could help answer that one ?

    It would appear nearly everyone will have some weight gain from any of theses oestrogen inhibitor tablets whether they are Tamoxifen or any of the other aromatase types :(

    There are a lot of options - it's trying to find which one works best for you as you are on these for a long time.

    You can check out this Cancer.Org website page (a couple mentioned may not be available) as it is a US cancer support site but the information offered is great.

    Hope you get it sorted to your advantage, take care, G n' J

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you for your help, I will check out the website.

    S x

  • FormerMember
    FormerMember

    I know it's scary but I had an allergic reaction to letrozole and had to stop taking all my medication including my in gales and lanzaporole  and then slowly introduced them back but not the letrozole I have now been put on exemestane and yes still have joint pain but if it's to bad I take paracetamol.  I didn't get these tablets until after radiotherapy  as they are your belt and braces  felt it must be all right to have the delay otherwise they wouldn't do it. I'm talking of 2015 and I had Ist mammogram April 2016 and there was no evidence of disease.  So hope this helps put your mind at rest.

    Pearl

  • FormerMember
    FormerMember

    Sorry that should read inhalers b☆☆☆☆y sausage fingers.

    Hugs Pearl 

  • FormerMember
    FormerMember in reply to FormerMember

    Thanks Pearl for your advice (sausage fingers)

  • FormerMember
    FormerMember in reply to FormerMember

    Hi 

    I'm no longer on Letrozole - long story but nothing to do with my cancer treatment. I had done a bit of research while taking it, I had a year of misery with stiff joints, hot flushes through the roof & feeling sluggish probably because of weight gain. What I was finding was different brands had different levels of SE. The best brand to take was the original brand called Femara the problem with the Letrozole brands appears to be the fillers they use. 

    I put my case to my Breast Consultant who said it wasn't her budget (it's much more expensive) but she said to tell my GP my story & ask him if I could try it - if he disagreed she would back my case. He agreed to a 3 month trial & WOW what a difference, thankfully he let me stay on them. I hope this helps because I was having to step out of life with the SE's from Letrozole. Good luck.