Cancer Related Brain Fog: How do you cope with it?

Thank you Laurie! I’ve found several things that cause me to have brain fog on my cancer journey. For me the worst is the estrogen lowering medications we need to take for years after initial treatment. I was on Anastrozole first and thought I was loosing me mind! I couldn’t think straight at all, and my memory was so bad I just retreated from everyone because I felt like I was sliding into dementia. My husband makes fun of me and frequently makes ‘cute’ comments about my poor memory and cognitive function. It’s very hurtful, but I suppose that’s how he copes with my cancer journey. I have an amazing oncologist who has worked with me to try different medications to find one with the least side effects for me. She even gave me a break from meds for a few months this past summer to see how I responded. Within a few weeks off the meds, my cognitive function was pretty much back to normal. In late September I started on Exemestane, it’s not great, but better for me than Anastrozole or Tomoxifin that I’ve also tried. I’ve learned to adapt to these memory side effects by writing myself notes and using my iPad to calendar, and make lists to keep track of things. These cognitive side effects of breast cancer drugs aren’t often discussed, but for some of us, they are very real. Unfortunately, until there is a ’cure’, we must do the best we can to live with the treatments available. I try to look at the positives rather than dwell on the things that can’t be changed. But being positive about treatment is challenging sometimes too! I am grateful for the medical advances that we do have, and that breast cancer most often is no longer a death sentence.

Is there any empirical evidence linking estrogen loss from AIs to cognitive function? I have not been able to find anything. I have been faithfully taking my letrozole for 5 months and seem to be confused and forgetful a lot, but maybe it’s because I just generally feel lousy.

The presenter at this session did not talk to effect of any medications on cognitive function. I am taking a break from AI (with permission of oncologist) to see if I see any changes with cognitive and fatigue issues.

I did check https://www.ncbi.nlm.nih.gov/pubmed for any published studies on hormone therapy and cognitive issues, there are some published studies. I tried reading some, but very technical and not sure if there was any conclusion.

Laurie

Just google ‘cognitive function and aromatase inhibitors’. There is a lot of information available. You’re right Laurie, it is technical, but for me there was still a lot good information to learn from. Though I am truly grateful for the medication to help reduce recurrence of breast cancer, but the side effects can be very challenging. I’m 66, I’ve worked very hard to be financially secure during my retirement years. As grateful as I might be for these meds, I’m also disappointed that my quality of life has been compromised by an essential treatment for breast cancer.

Thank you, Laurie. Sometimes we need to hear that one more time. It is real.

@cfacarol
There are plenty of studies on the effects of reduced estrogen via natural and surgically-induced menopause, and we can lump ourselves into the larger pie. So, yes... estrogen loss from AIs does effect our cognitive function (it's not your imagination). Here's a good article from the Frontiers of Neuroendocrinology: https://www.sciencedirect.com/science/article/pii/S0091302216300024

Thank you for the link, I had not seen this article. I do not have a scientific background. Most of the article was extremely complicated and I did not read it in great detail. The Conclusion (section 8) does state that although a lot of studies have been done, there is no evidence to date between low estrogen and cognitive change and that more research is needed. Perhaps I am missing something.

@cfacarol
This particular study sought to find inflammation as a mediator of low estrogens and cognitive changes, and notes that there is no empirical evidence for that. However, throughout the article, it notes that their search found numerous studies demonstrating that chronic low E2 levels are associated with cognitive impairments in both human and animal studies.

Brain fog, also called chemo brain, most certainly is real. Here's an article from Mayo Clinic with tips on how to manage it:
https://www.mayoclinic.org/diseases-conditions/chemo-brain/symptoms-causes/syc-20351060
But I'd like to gather your tips of dealing with brain fog. What do you find is the biggest challenge with brain fog? How do you overcome or adapt to this challenge?

@colleenyoung
Brain fog is a humiliation, as we all, I imagine, had previously considered ourselves as competent, independent agents of our lives. Now, suddenly, and for example, we mix up dates and times on the calendar or completely forget them, despite our best efforts, or find ourselves getting anxious when something goes awry (like my furnace quitting the night before Thanksgiving....) or buying completely inappropriate light bulbs when I otherwise would know better, etc. I also have little memory about things which happened during and the first year or so before and after chemo.

I keep two calendars... a master at home and an abbreviated one in my purse... and use lots of post-it notes, but sometimes it just doesn't help. I am getting used to returning inappropriate merchandise like the light bulbs or the garden lights timer... that kind of thing. But most of all, I try to get my friends used to the fact that I struggle with the calendar, although I notice that they just don't understand. Their assumption is that chemo brain, like chemo treatments, should be over by now (two years out). I certainly wish that was the case!