Tamoxifen and Cognitive Changes

TCW

Hi all, it's been many years since I last posted, but I really need to know I'm not alone in this.

I am going on year 12 on tamoxifen and I have been cognitively getting progressively worse since I had to restart it in 2019 after a local recurrence. I have deficits with word finding (have had that all along since chemo, but notably worse recently), math calculations have become challenging in recent months (could not count backwards by 7s or solve a simple story problem correctly), and I am really SLOW at processing - feels like I'm walking through sludge to think. I am unable to answer questions when I am asked something (which has made me concerned about being able to continue working), and I have become clumsy and taken a fall recently that I couldn't respond to to break the fall. And I am losing short term and long term memory. I cannot seem to hold onto thoughts and work through things I used to do so easily (such as keep the finances on track).

Have any of you had similar side effects with tamoxifen?

My onco wants me to stay on it for another 8 years, so I've cut the dose in half in the hopes that the cognitive issues stabilize. People don't understand that oncologists are looking to keep you from getting cancer again; all these side effects are really brushed off when I've brought them up. My primary care just ordered a brain MRI, but it's hard to say if toxicity from tamox would show.

Beaverntx

Simple answer is, yes, I have similar side effects on Tamoxifen. I am struggling after 3 years on it, cannot imagine 20 years!

TCW

Beaverntx - thank you for responding. It is possible that you will see improvements after you are off of tamox. It really did serve me well for all those years, but my body and brain are just not happy to be back on it. My family doesn’t fully grasp what I’m experiencing, and that is tough. I don’t want to have to talk about it all the time and tbh it is really hard to find the right words to even say or write it down. I used to be so eloquent, had a really strong vocabulary, and excellent at spelling and grammar. I am grateful to be alive, but I have to somehow find a balance to have a good quality of life

Rah2464

I have definitely noticed the cognitive impacts after passing year three on this medication. Math, multitasking, and vocabulary have all become harder. It is hard to separate out what is aging and medicine impact. However, most of my family ages well with high functioning mental capacity into their 80s so my default is the medicine as a source for the decline.

PurpleCat

I'm definitely feeling this lately. More and more trouble finding words, difficulty concentrating, and just clumsy. My thinking just feels sludgy. It's a similar feeling to trying to get through the day after a couple of nights of not getting enough sleep. Really hoping it gets better when/if I can stop taking the stuff. Is there any hope?

jhl

I am very confused TCW. What age were you when you started tamoxifen? Honestly, I've never, ever heard of an oncologist wanting a patient on tamoxifen for 20 years. Personally, I think I would have a discussion about the risk/benefits of continuing tamoxifen for several decades, if it were me. Do you continue to see an oncologist?

TCW

jhl - I was diagnosed age 42, and spent 9+ years on tamoxifen. I trialed an aromatase inhibitor and I didn’t tolerate it (at about 2 weeks, woke up feeling like I’d been hit by a car, every joint hurt). When I was diagnosed with he recurrence age 52, onco said basically that I had to start a whole new 10-year round of it if I could tolerate it. I honestly don’t think they worry overly about SEs unless they are life threatening. I haven’t had any clots as of yet, and that would of course be a reason to discontinue tamox. The plus side was no chemo, hormone receptor positive BC, they said they’ve determined chemo won’t be helpful (at least with the recurrence).

TCW

Rah2464 - thank you for responding. I figure between my hysterectomy in 2016 and the tamoxifen, and menopause, I’ve been sucked dry of all estrogen :

TCW

Purple Cat - you’re SEs are really identical to mine. I think if I’d been able to quit at the 10 year mark, my symptoms would have improved some. I know this bc I have through these years taken a tamoxifen vacation at times, and I definitely felt a bit clearer after it was out of my system. Now, I’m uncertain. But definitely I’ve noticed a worsening the last two years that has distressed me. I do have hope that you might bounce back when you’re done

Brca

I did have the same problem. Couldn’t remember my coworkers name. Forget names, appointments, simple task. I was angry for everything.I took it for one year after I was diagnosed and stopped . I’m scared the cancer will comeback. I didn’t take any medication for 2 years but im about to start again. My doctor wants me to start. My cancer was stage 0 and I had mastectomy.

ThreeTree

I think this is indeed an estrogen deprivation problem. I don't take Tamoxifen, but an AI (Letrozole), and experience the same things you all are talking about. It's awful and we all need a solution.

TCW

Brca - Tamoxifen is very good at preventing recurrence. However, we all metabolize it differently. If you had that severe of cognitive issues after one year, I completely understand you wanting to quit. Have you talked to your Onco about doing a half dose? I am doing 5 mg in am and 5 mg in pm. Might be a good solution for your quality of life and allow you to have some protection.

TCW

ThreeTree - exactly. We were not made to be robbed of all estrogen and all these impacts are related to that. I have to say, I have learned all of these things through my own independent research and nurse knowledge. I’ve never had an in depth conversation with my Onco about this. Now, after my first 8 years, I would have said that it’s been not that terrible, even with the uterine cancer aspect. I think there has got to be destruction of brain cells and at a certain point, we all hit that toxicity threshold. For some, it’s a year, and for others, it may be sooner or later. I am hoping to have a clean brain MRI and have the cognitive changes improve (or at least not worsen) on the half dose tamox.

WC3

Oh God yes. I felt like I could not think sometimes on Tamoxifen. I had that mental sludge feeling you mention. I'm now on anastrazole and lupron and am cognitively feeling back to my old self, but my bones are disintegrating faster, I hurt more, and my skin doesn't look as good.