New to forum - want to talk about my meds

Hello! In 2018 I was diagnosed with stage 2 BC. I had chemo first (taxol only as I refused AC), a lumpectomy with one node removed, and radiation. I’ve been on Femara/Letrozole for 4 years now and I’m recommended to take it for one more year. I am attributing some really unbearable side effects to the Femars and I want to know if other people have had similar side effects. The ones I am having extreme trouble with are insomnia, weight gain, depression, brain fog/forgetfulness, and fatigue. My doc says it’s not typical for symptoms to build over time but I feel like they are. Anyone else having these issues or have any input at all? Thanks! 

I’m afraid I’ve no experience of this drug but these are a few thoughts:

  1. Do you notice any difference between brands? Sometimes (despite pharmacists saying it’s impossible) one brand creates side effects and another feels more comfortable. If you’re aware of this you can ask to have your named brand eg Accord, Teva, written into your prescription, Pharmacists are directed to the cheapest brands but a change to a pricier brand with a different base may help.

  2. Is there a oncologist at your hospital who focuses on HT? S/he must have heard everything going on patients with HT issues and be able to help. They may be able to establish which of the drugs is the culprit or may be willing to write off a year in favour of quality of life. I don’t know if 5 years is a random decision (I was to be on anastrozole for 10 years) and can be foreshortened. They may be able to move you on to an alternative like anastrozole but they are all hormone-related so you may experience the same SEs.

  3. Breast Care nurses often have their ear more to the ground. You might find talking to one of your BCNs might lead to some advice. 

  4. You don’t say your age but Letrozole brings on a form of menopause which your list of symptoms fits. It can be an unpleasant stage in life lacking oestrogen but unfortunately your breast cancer precludes any remedy as your cancer is hormone-receptive. Then it will be a case of grin and bear it and hope the symptoms ease off once treatment finishes. But they may not of course.

  5. Which side effects are ‘really unbearable’? How long have you lived with them or was it an insidious build up? Is it possible to address one or two without affecting your treatment? For example CBT can help with fatigue and insomnia. 

I ask these because you know breast cancer can come back, either as a difference breast cancer or metastasising to somewhere else in the body (Secondary or Stage 4 cancer - mine is in my medial canthus, nose/eye socket). If you want to stop the treatment, which would seem the obvious choice from your post, you must find out what the odds are and weigh those against interrupting treatment. Quality of life is essential but no one wants the disease back again in any form.

Speaking as a talking and breathing bundle of chemo side effects, I truly sympathise and hope you get many responses with possible remedies. Good luck xx