Letrozole

Hi I’m new to this forum.  I have had breast cancer twice, 2nd time round was in the same breast.  Because of this I decided to go for a double mastectomy to avoid a “3rd” time.  First time round I was put into Tamoxifen for 5 years, apart from the common side effect of hot flushes & mega weight gain  I felt well on then.  However, I’m now on Letrozole, have been taking them for just over 12 months and am experiencing just about every single side effect listed and more.  Recently I have been getting excessive sweating, dull like growing pain in my left leg from hip to  knee, excessive fatigue and more recently bouts of Vertigo & Tinnitus which are so debilitating I keep having to take time off work.  I’m interested to find out  if anyone else is experiencing this on Letrozole?  I also have aching joints which I can cope with, excessive itchiness all over the body, mainly at nigh but I take antihistamines for that.

With all of this going on it’s making me feel like a complete hypercondriact... is anyone else experiencing all of this and how do you cope? 

I look forwards to your comments xx


  • I stopped taking Letrozole in 2017 after too much bone pain, I had a shoulder replacement in 2018, a knee replacement in 2019 and my other knee is being done in January 2020. So many reports of bone pains yet still it is prescribed.

    for a while I took nothing then a new consultant gave a different drug

    I now take aromasin also called EXEMESTANE .

    dont just suffer, talk to your consultants, there are alternatives out there ladies.

  • Hello, I've just been diagnosed and need a lumpectomy. I'm eighty three and about to start on Letrozole. The side effects sound frightening so I came online and found this chat room. It seems like I'm right to be worried! I don't know whether to start on the pills or not. I'm not sure at my age whether I am strong enough for the operation and radiotherapy - mentally or physically.

    I wondered if anyone regrets coming off, or going on, Letrozole, and if anyone my age has any information generally.

  • I would say have the lumpectomy & then radiotherapy if you need it.  It doesn't happen together.  They wait until you're healed.  Radiotherapy didn't start till 3 months after op for me.  They need to examine what they remove to make sure they've clear margins & if you need further treatment.  If the tumour is oestrogen positive/receptive then you get prescribed, in my case, Letrozole then Anastrozole then Tamoxifen.  The new one is Exemestane.  Letrozole is to reduce the oestrogen level which the cancer feeds upon.  At 83 I don't think I would start Letrozole.  Unless it is to shrink it before removal?

  •  

     

    Hello Musiclady

    Welcome to the forum,

    I am so sorry to hear that you have just been diagnosed and need a lumpectomy. We all react differently to drugs and, some people have no side effects to Letrozole, whilst others do. There are a number of people who have come off Letrozole on this site. Most of them have changed to other drugs instead.

    If you start on Letrozole and experience side-effects, you can always stop them or change to something else. Nothing is caste in stone. I am 70 and didn't feel strong enough for an operation either, but you get through it when you have to. I had a lumpectomy 10 years ago, followed by a double mastectomy for a second bout 9 years ago. I took Tamoxifen for the first year and Letrozole for the following 6. Unfortunately, I had a number of side-effects,but stuck with it to the end. The main reason for this was that I didn't have radiotherapy or chemotherapy.

    Have you discussed the statistics foor taking Letrozole as opposed to taking other medication or none? Your consultant should be able to provide these for you. I wouldn't take any medication without knowing the odds for all the available options.  I don't know what type, grade or stage your cancer is at and, I am not a doctor, but I understand that it is not always as aggressive in elderly people, so this should improve your chances too.

    If you want to read some other posts about coming off Letrozole, use the search engine on this site, but, bear in mind that these are only the negative experiences of Letrozole. We seldom hear about the many positive ones.

    To get to the search, go to the top of this page and click on 'search' on the left, then insert coming off Letrozole or something similar. This will bring up previous posts on the topic.

    I hope that someone closer to your age comes along to tell you  about their experience and, hope that you reach the right decision for you.

    Do please keep in touch and let us know how you are getting on. We are always here for you.

    Kind regards,

    Jlamine xx

  • Thank you ClaireBr and Jolamine for your replies. The consultant just said to take Letrozole and that I will need to continue after the operation for five years. No alternative was mentioned. I'm afraid I took it all on trust it is only now I'm starting to wonder why and worry about the long list of side effects.

    But from what you say I will certaily speak to the consultant again and ask why at my age I need Letrozole and if it is the best thing. Thank you again.

  • I suspect they start us on Letrozole because it is the cheapest.  As a timeline, I had my op in late August, radiotherapy the following Nov and didn't start meds till the following April.  They need to find out if the tumour is oestrogen positive first before starting on Letrozole.

  • I'm using EXEMESTANE with not much in side effects, few hot flushes. I had Anastrozole then Letrozole then tamoxifen and gave up in despair.  A new consultant gave me EXEMESTANE. I'm just coming up to my five years and will be 70 next year.

  •  

    Hi Musiclady,

    You will find it helpful to write down a list of questions before you next see your consultant, as it is all too easy to forget something important at the time. Do you have a family member or friend who can accompany you to your appointments.This can be helpful too.

    Don't be afraid to ask questions My main one in your case would be 'By what percentage does he expect Letrozole to prolong your life?'

    Kind regards,

    Jolamine xx

     

  • I am making a list and yes, I will be asking why I need Letrozole at my age for so long. It's interesting to hear about the alternative drugs. If I do get bad side effects I shall be asking about them!

    My son will go with me, unfortunatley no other family near by.

    Best wishes to you all

  •  

    Hi Musiclady,

    It is normal to take Letrozole for 5 years. In fact some oncologists are now recommending that we take it for 10 years, so don't worry about the length of time that you're taking it for.

    I'm glad to hear that your son will be attending your appointment with you. It can be helpful to have 2 of you to ask the necessary questions.

    Kind regards,

    Jolamine xx