Letrozole questions

Hello everyone, I am new to the forum but have been reading it most days since being diagnosed in November last year.  I would like to hear your opinions or experiences on a couple of things bugging me at the moment, I will query this with my BCN but really wanted some food for thought first:-


I never asked about the value of taking Lezrozole and what the benefit is for me (been taking it since Feb this years, SE - a few hot flushes, but now a few aches and pains and this week my gum has started to bleed).  I am wondering what the risk/benefits are in respect of quality of life/vs actually having a life (I’m 62).


My questions really are:- has anyone decided to stop taking Letrozole and what advice where you given regarding the +/-‘s on that decision and secondly anyone else had/having teeth or gum problems.


Hope to hear from you and thank you so much for reading this if you got this far lol x

Dear Cathy


It sounds as though you need to discuss with your Oncologist the relative benefit of taking Letrozole (or one of the other hormone therapies) as so much will depend on your own personal pathology, your own circumstances and any other treatments you are having to juggle with it.


If it’s of any help, this is where I am at the moment.


I had a lumpectomy on 24 April 2018; a clear margin was removed successfully. One sentinel node was cancerous, so the surgeon gave me an axillary node clearance. Fortunately it transpired that it was only the sentinel node that was affected. The tumour was strongly oestrogen +ve, 8/8, but HER2 -ve.


Chemo was suggested but I refused it, as I’m in the grey area of women, publicised recently, who are offered it as a matter of course, but who might not benefit and for many of whom it would be an over-treatment. I was told that radiotherapy, hormone therapy and bisphosphonate therapy are all mandatory for me on account of being ER +ve. . 


On 29 May I was started on Letrozole. After 3 weeks on it, I developed a rash which gradually spread across both breasts, across my mid-riff and down my left arm (the one with no lymphatic system). The Clinical Oncologist assessing me for radiotherapy announced it was a drug rash, prescribed an anithistamine and also Anastrozole to be taken after a 3-week wash-out period.  I am seeing the Onc this coming Tues so will ask him whether to postpone taking Anastrozole until after radiotherapy has been completed (wed 18 July) becasue of the likelihood of reactions from both treatments. (Skin soreness and fatigue from rads have been predicted for, probably, the end of next week.)


I didn’t have any bone or muscle ache with the Letrozole, or fatigue beyond my normal level, but 3 weeks might not have been a long enough trial for those side effects. I’ve been advised some effects might take weeks to appear.


You might like to ask the Oncologist the following questions:

• how strongly ER +ve your tumour was;

• could you try other hormone therapies instead of Letrozole;

• could your Onc give you some idea of the percentage advantage of taking a hormone therapy as opposed to not taking any.


Both my GP and my Cancer Nurse have told me that different brands of the same hormone therapy can have different side effects with different patients. The Onc told me he cannot specifiy the brand himself as his own prescriptions have to go through the hospital Pharmacy, and they decide the brand according to cost. My GP has said he can specifiy the brand and I can then negotiate with the local Boots pharmacy.


So, it’s hit and miss for most of us.


The medical profession still seems to be focused on prolonging life rather than taking into account the quality. They tend to overlook the practical and emotional issues patients have to face. Pharmaceutical firms provide a great deal of hype to promote to doctors their most recent, and most expensive, drugs as their priorities are making money for the share holders.


It might help you to think through your daily life in detail, how you are having to cope with the existing SEs throughout the day, whether there is anyone who can help you through all this or whether you have to cope alone, and how you feel emotionally. How ready are you to try different drugs before giving up on this type of therapy? Having some notes you can talk the Onc through might help to get your message across and help them to see your situation from your perspective.


Whatever you do, it’s your decision to make.


All the best.