Today I made the decision to stop taking Exemestane. This drug has made me feel horrendous for months but I've persevered with it, having had terrible side-effects from both Letrozole and Anastrozole. During that time I've felt depressed, angry, violent and today...suicidal. I was none of those things before I started taking aromatase inhibitors. I had Grade 2 Lobular breast cancer, a bi-lat, chemo, rads and now these pills. In all that time, through all those struggles I never once felt so bad as I have on AI's. I've had breaks from the Exemestane and it's like the sun came back into my life. But, I felt I had to keep taking it. Because that's what we're told, isn't it? Keep taking it, persevere! But what about our quality of life? Those of us who are pressurised to continue with this drug? I don't want to feel like taking my own life after fighting for it so hard. Not to improve my chances by just 2%. We are faced with so many hard choices on our journeys, but this choice has been made easy for me today. I cannot live like this - so down the toilet they go. Love to you all wherever you are on your journey.
Thank you all so much for your kind and understanding replies. I really do feel less alone now in my decision. Having stopped taking it I feel like the sun has come back out, my quality of life has improved hugely, I have more energy and feel far happier.
Your post very succinctly described my own devastating response to tamoxifen in the summer of 2015. I can relate to everything you said, my thoughts and feelings about the drug were identical (though a different drug) and can say that you won't regret the decision you have made. At the end of the day my choice was 'easy' too, there really wasn't a choice, as I believe if I'd have continued I wouldn't have been around to live a life - with or without cancer. Best Wishes to you.
I couldn't tolerate letrozole or exemestane. I'm now on tomoxefin which I'm managing better. I'm post menopausal so tomoxefin is not the first drug of choice . But like you I felt really terrible on aromitise inhibitors and had no quality of life. However I don't know if tomoxefin would be of any help to you as i had estrogen receptive cancer so different from yours . x
Hi, I’m Angie, Feb 2014 diagnosed bc, double mx, agony, chemo, 4 recon surgeries later, still awaiting another as all not right with the noobs as I call them. Started with Tamoxifen, hated it, then Letrazole for a year, made with feel like I was 90 not 52!! Then Onc changed me to Exemestane, in June, still awful, joints ache, nearly 3 stone weight gain from both but later one made me bloat too. I stopped taking it last week to have a break, right or wrong I just feel they turning me into a very old fed up lady before my time. Xx
It sounds like hormone treatment has been an absolute nightmare for you. You seem to have given them a good go as you went through surgery, chemo and the works in 2015 (? Apologies if I have this wrong). I would have thought you would have gained some protection from the hormone treatment that you have already had.
That is a very poignant statement you make "I don't want to feel like taking my own life after fighting for it so hard". It is still a bleeding lottery with this hormone treatment lark. In the end, as you indicate you have to weigh up what is best for you and your quality of life in making a decision that you are comfortable with.. So hats off to you Strawb,