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

Posted by Laurie @roch, Dec 4, 2019

I attended an Empowered to Live Well Session on Cancer-Related Brain Fog at Rochester Cancer Education Center yesterday. Very interesting. I think the most important fact I learned is that it is a real thing, it is not just me. This condition is called many things: chemo fog, chemo brain, cancer-related cognitive impairment or cognitive dysfunction.

I copied the following from Connect Cancer Education page that suggesting following sites for additional information:
Both http://www.mayoclinic.org and http://www.cancer.org have information on Chemo Brain including signs, symptoms, questions to ask your doctor, and more.

Laurie

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.

REPLY
@lisman1408

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.

Jump to this post

It 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.

REPLY
@cfacarol

It 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.

Jump to this post

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

REPLY

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.

REPLY

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

REPLY
@cfacarol

It 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.

Jump to this post

@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

Liked by lisman1408, cfacarol

REPLY
@elizm

@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

Jump to this post

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.

REPLY
@cfacarol

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.

Jump to this post

@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.

REPLY

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?

REPLY

@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!

REPLY
@elizm

@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.

Jump to this post

Thanks, you are correct. The study specifically addressed inflammation. It still seems that in the studies that were cited, the link between estrogen loss and diminished cognitive function was was not all that strong, and many of the studies were in animals. Have you seen anything that specifically links AI use and cognitive function?

REPLY

@cfacarol
Here's another article: "Chemobrain: How It Happens, and Perhaps How It Can Be Stopped" — https://www.medscape.com/viewarticle/909047

and another, "What is the Best Approach to Managing Chemobrain" — https://www.medscape.com/viewarticle/899651

REPLY
@colleenyoung

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?

Jump to this post

@colleenyoung Hi Colleen. I believe your hyperlink to the article was incorrect; it brings me right back to this discussion thread. If you have the location of that article handy, I would really appreciate your re-posting the link. My MIL is experiencing the symptoms described in this discussion thread and we could really use the help. Thank you!!

REPLY

Prior to all the cancer treatments, I considered myself intelligent and organized. I still think I am intelligent, it is just harder to do same task that use to be easy. When I started having cognitive problems, I was not sure what was causing. Was it chemo, other meds, aging, stress, lack of sleep, etc…

When you are dealing with cancer and then add the inability to function mental as you use to, it is very frustrating !

First, talk to you oncologist about. Some side effects of cancer treatment we have to learn to live with, but let dr know about your side effects.

I have to accept it as another side effect of treatment (like fatigue) . I just need to modify my like life to accommodate these changes.

Here are a few of the challenges of brain fog I am dealing with and how I am trying to adjust to them.

• Some tasks seem overwhelming. I must divide task into smaller task that I can finish in 15-30 minutes.

• Problems with concentration. I no longer try to multitask. I need to concentrate on one thing at time. If I have divided task into smaller task, then it is easier to concentrate on task for that shorter time.

• Communication. I find myself having troubles getting my thoughts into the correct words. This is most obvious in verbal concentration. I have problems finding correct word and even pronouncing some words. The only thing I have found to help is to slow down.

• Memory. Like others have mentioned I rely heavily on lists. I already used lists to keep track of To Dos, but now I have to write down even little tasks and write them down immediately. You need to find a system that works for you. Before retirement I was a project manager. I just need to apply some of the principles of project management to my personal life. There is satisfaction when I complete something and can check off the To Do list.

Laurie

REPLY
@davidsalchow

@colleenyoung Hi Colleen. I believe your hyperlink to the article was incorrect; it brings me right back to this discussion thread. If you have the location of that article handy, I would really appreciate your re-posting the link. My MIL is experiencing the symptoms described in this discussion thread and we could really use the help. Thank you!!

Jump to this post

Oh dear, @davidsalchow, you're quite right. I did simply link back to the discussion. I guess that's one sly way to keep people in the conversation, right? Here's the article from Mayo Clinic with tips on how to manage it:
https://www.mayoclinic.org/diseases-conditions/chemo-brain/symptoms-causes/syc-20351060
David, what is your interest or experience with chemo brain/brain fog?

REPLY
Please login or register to post a reply.