Stopping all meds

I’m on letrozole ( Femera) brand. Changed to Femera and pains much improved. Gives me dry sore eyes though and now and again a dry cough. I will always remember my consultant saying to not stop the letrozole. Think carefully before you do it and speak to BCN first xx

I have swapped from Anestrozole to Letrazole but only ten days in on new tablets. I am not certain I will carry on if I get any side effects that compromise my quality of life. Like you I was stage one but at 75 I feel I have to make the most of my remaining years. I am already on statins because of raised cholesterol, which only happened after starting Anestrozole. It is a really personal thing and I feel you have to go with what feels right for you, we are all different.

Thanks, I am 70 and like you my quality of life is more important at this time in my life.

I think the consultants and GP’s will always recommend us continuing with medication they have prescribed but all medications affect something else in our system. None of us want our cancers to return but when you reach your twilight years you have to weigh up what is right for you. It has to be up to the individual. I have a friend who tried every statin going and all gave him horrible side effects so he stopped taking them some 10 years ago. He is 75 and still leading very active life. He was diagnosed with non-hodgkins lymphoma some 15 years ago and has been in remission for 10.  

Oww Patcher I am sorry your are having painful joints and your back.... my view is 'this shows the tablets are working - they are taking the oestrogen out of your body'.  

When I first started I was so scared of how I and my body would feel - I went with the mind set 'one day at a time' and if I was to stop taking the tablet how would I feel if it came back .... the latter made me continue taking them.

Before stopping consider various options - the main one of trying various brands - ask your consultant or GP to prescribe you Femara - this is the best of them all as this was the original.

Also consider asking about and taking the antihistamine tablet "Loratadine" sold under various brand names such as Claritin (only mentioning this one as you might be familiar with the name - however, there are a lot cheaper brands on sale doing the same job).  

Loratadine is said to help ease a lot of the painful side effects (I don't know how, I am sure there are a few ladies on this site taking it that may be able to help more).

Also, as a last resort you could try taking 'half a tablet' daily or nightly or even take tablet every other day (the amount of letrozole in the daily tablet is a lot higher than the dose required to be effective).   

I feel any of these options would be better than stopping your tablet.

I am not medical at all and would suggest you discuss any of the above with your Doctor or Nurse.

You could also try the NHS website 'Predict a tool' - this gives an idea of the effectiveness and benefits from taking the tablet, I'll attach a link here to see if this can help you....

https://community.macmillan.org.uk/cancer_types/breast-cancer-forum/f/general/246665/predict-tool---online-tool-that-helps-patients-and-clinicians-see-how-different-treatments-work-nhs-website

https://breast.predict.nhs.uk/tool

I have added the websites disclaimer:-

Disclaimer:
Predict uses an algorithm based on information from many thousands of women diagnosed in England and large randomised controlled trials of different treatment options.
However, it can only provide a 'best guess' of likely outcomes based on current knowledge, and it can never provide an accurate prediction for an individual.
Patients should always consult their own specialist, who will be able to discuss the results in a more personalised context.

I hope some of this helps - at the end of the day do what is right by you, nothing that causes you upset, what you are comfortable with xx

Hi Evajean,  yes it is a hard decision to make and I think that if you have co morbid conditions like heart disease, diabetes, severe mobility issues etc you may not want to take those AI pills as they have risks too.  
I saw a new medical oncologist last week and he stressed the importance of taking my Anastrazole for 5 years as I was 100% ER and PR positive. He told me the positive effects of the AI’s last for many years after you stop taking them.  I had stage 1 early breast cancer and tumor was 3 mm with 6 mm DCIS.  I am doing OK on Anastrazole and have been on it for a year but do have some side effects but am managing pretty well.  Don’t know how I would feel if I had severe side effects.  
Medical oncologist also told me my risk for recurrence was 10% lifetime risk.  He also ordered Signatera test to see if I have any residual disease.  Here is the link https://www.natera.com/oncology/signatera-advanced-cancer-detection/patients/signatera-for-breast-cancer/#:~:text=The%20Signatera%E2%84%A2%20Residual%20Disease,DNA%20released%20by%20cancer%20cells.

I hope they can do the test as tumor was very small and they need to have enough cells.  Oh well will see.
It certainly is a personal choice and a good discussion to have with medical oncologist.

Take care and hope letrozole works better for you.

Barbara 

I'm with you Patcher,  I've stopped taking my  meds, but not informed my bcn yet. I'm giving myself a break as I was getting really bad headaches.   I' ve seemed to have so many unrelated 'problems' since I had breast cancer last year and feeling like a hypercondriac, I just can't be doing with the discomfort of the drugs too. I may try them again in a few weeks just to be sure it is them causing the headaches. I'm 72.

Hello.  I'm only speaking personally here, not offering advice.

I've had breast cancer for nine years (I now have bone metastases) and have only ever taken aromatase inhibitors occasionally - until the side effects became too much of a problem.  My symptoms are the usual suspects.  Loss of appetite, fatigue and needing pain relief have only been problematic for the last eighteen months.  Rest and decent pain relieft (also causing side effects of course) are all I use to live the best I can.  I'm not well, that's obvious, but I'm not desperately ill either.  In my case things were far worse wrestling with the side effects of the drugs.  It seemed to be a case of swapping one lot of trouble with another.  

I don't know if this is any help to you.  I wish you well.      

Thanks my risk is about 3% so that has decided me.

Thanks,  at 70 my quality of life is more important, I can't live the next five years crippled by side effects, got too much living to do! I am a Christian so do not fear death, if it comes a bit sooner it's not a problem for me.