I have recurring ER2+ breast cancer metastasised to my spine. (original cancer 10 years ago). Diagnosed in August 25. I had radiotherapy for the spine cancer and am now on Letrosole. I have been taking it for a month now and have serious cognitive impairment. I cannot finish sentences and repeat them looking for the noun without success. Worse than that I experience unreal thought. I ask questions about things that aren’t real and that have not happened. I imagine conversations and get agitated when my husband doesn’t know what Im talking about. My consultants don’t seem to have other experience of this kind of side effect and say just stop the Letrosole. I worry I have not given it enough time but also that it is pretty scary and maybe I should stop. id like to hear if anyone else experienced such effects.
You’re stage 4 so stopping medication isn’t an option if you want to continue to do well. But is there another medication you can take? That’s worth discussing. The confusion you described is pretty standard fare for estrogen deprivation but the hallucinations are a new one for me. Have you checked Chat GPT to see if there are any studies linking low estrogen and dementia/hallucination type symptoms? I find Chat GPT very helpful for this kind of thing as long as you’re careful to check it’s sources.
I don’t know anything about the imagined conversations but aside from that experienced so much cognitive impairment from letrozole and also examestane that my oncologist sent me for a brain MRI. I was thinking I would need to stop work. Was also affected by tamoxifen so then went on half dose tamoxifen. However six months later got a recurrence.
Now on Anastrazole and think maybe it’s not quite as bad as the others for me. But maybe once I had a recurrence I am more willing to put up with it.
There is a scientific literature on cognitive decline caused by aromatised inhibitors.
Thanks for your response. are you saying that prior to the recurrence the half dose of tamoxifen was better tolerated until you had a recurrence? Why do you think the recurrence allowed you to be more willing to tolerate the side effects?
Hi Josie,
The half dose Tamoxifen was definitely much better tolerated. I felt able to do well at my job which involves post grad academic teaching and felt really good. The oncologist at the time was emphatic that this was a good option as it was better than nothing and allowed me to live my life. Also that I had three years on full dose of hormone suppression under my belt by then.
After the recurrence I changed hospital and new oncologist and he also said he would have done the same.
But I was really shaken by the recurrence and very upset. Just felt that I didn’t want to die before I am ready. I think that’s the essence of why I feel I will able to put up with more side effects. But also the Anastrazole- maybe it suits me better. So I think it’s a combination of Anastrazole impacting me a bit less than the other ones, also feeling more prepared to ‘pay the price’, maybe also being a few more years post menopause?
I would suggest trying a different aromatase inhibitor. My reading of the research was than examestane affects the brain the least out of letrazole, examestane and Anastrazole, though my anecdotal personal experience was not in keeping. There are scientific papers on this that I took to my oncologist at the time (poor her!).
I would also ask your nurse and oncologist if it’s ok to take supplements and try a good vitamin b supplement and omega 3 maybe also magnesium at night as maybe these can help cognitive issues. Worth a try if it’s safe for you. Also any drugs they can suggest?
If you are working, or planning to go back to work you can refer yourself to Access to Work- free government disability scheme. I got work coaching sessions which helped me to adapt and cope with my post chemo brain issues, which were very helpful.
I hope there is something useful there.
Take care.
X
Thanks that’s very helpful.
Have you tried switching brands of the drug? I was on tamoxifen and doing fine until the chemist dispensed a different brand and within 3 days I was having horrendous side effects (had to pull onto hard shoulder of M25 when driving to work as I was in absolute agony). Spoke to my GP and they issued a new prescription specifying the brand I had been taking and within 24 hours I was fine again! Might be worth trying before thinking of stopping taking the drug totally
Good luck
Spikey
I’m sorry to hear this. I’ve been on letrozole since December 2020 and it does make my brain a bit foggy but nothing like you describe.
As Spikey has suggested, I have changed brand in the past and it made a big difference to me. I found one brand, Manx, made me really depressed. Soon as I switched brand I felt so much better. I would say it is worth a try as you really don’t want to switch treatment brands unless you have to. I hope you find a solution. Let us know how you get on.x