1. < Cancer: Managing Symptoms
Mentor

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

Posted by Laurie, Volunteer Mentor @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

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 31, 2021
In reply to @lisman1408 "I’m 68, the worst for me is that my son told me that I have dementia...." + (show)
@lisman1408

I’m 68, the worst for me is that my son told me that I have dementia. That really hurt. My husband doesn’t really understand either. I KNOW that for me, the drugs that I must take to prevent recurrence of breast cancer causes brain fog.

Each of the hormone drugs I’ve taken to prevent recurrence suppresses estrogen, and low estrogen causes brain fog. I can only describe it as permanently being ‘menopausal’ with no end in sight.

Anastrozole was the worst for me. I’m currently on Exemestane and that’s better, but I’m still not my former self. My regular doctor specializes in geriatrics and I told her about my son’s observations of dementia. She put me through all sorts of testing for my mental clarity, including a brain MRI. She found nothing that could indicate dementia. Or anything wrong with my brain at all.

But now, I’m so self conscious of making any kind of a mistake that I just stay home by myself where I’m comfortable, without anyone to criticize me for my brain fog. I’ve come to love my alone time! I’m most comfortable and feel like myself just being alone. When I do go out I stay to myself as much as possible.

Jump to this post

@lisman1408 Oh, how hard to hear this from your son! He probably would be apalled to hear how his comments have affected you! Have you shown him this post and your replies? Or perhaps your dr would kindly explain how much stress that puts on you? Has he noticed your reluctance to "engage" since his comments?

I have fibro, along with other health issues that include brain fog. Where it used to be that I was easily distracted by things ["shiny object syndrome" or "look, a squirrel!"] it has morphed a bit into a sudden loss for a word to finish a sentence. My husband will unkindly say, "finish what you are saying". Friends who understand will gently prompt me, "you were taking about..." to get me back on track. You never know how seeing a family member work with brain fog will affect someone.

Gentle hugs,
Ginger

REPLY
pattykatty | @crazyhazy | Nov 1, 2021
In reply to @lisman1408 "I’m 68, the worst for me is that my son told me that I have dementia...." + (show)
@lisman1408

I’m 68, the worst for me is that my son told me that I have dementia. That really hurt. My husband doesn’t really understand either. I KNOW that for me, the drugs that I must take to prevent recurrence of breast cancer causes brain fog.

Each of the hormone drugs I’ve taken to prevent recurrence suppresses estrogen, and low estrogen causes brain fog. I can only describe it as permanently being ‘menopausal’ with no end in sight.

Anastrozole was the worst for me. I’m currently on Exemestane and that’s better, but I’m still not my former self. My regular doctor specializes in geriatrics and I told her about my son’s observations of dementia. She put me through all sorts of testing for my mental clarity, including a brain MRI. She found nothing that could indicate dementia. Or anything wrong with my brain at all.

But now, I’m so self conscious of making any kind of a mistake that I just stay home by myself where I’m comfortable, without anyone to criticize me for my brain fog. I’ve come to love my alone time! I’m most comfortable and feel like myself just being alone. When I do go out I stay to myself as much as possible.

Jump to this post

You are not alone. I totally understand how you feel. I have taken 3 estrogen inhibitor to no avail. When the pain and other side effects make you feel as if your physical body is standing next to you to get away from everything, its horrible. I also am taking anastrozole now (4th inhibtor) for 10 months. I guess combo of all these meds, plus anastrozole now, does make a person feel brain fog is all around you. My son remarked I am senile. That hurts down to the core. My thoughts are with you.

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 31, 2023

Hello @pml, Thank you for the private message. I'm sorry that you didn't receive a response to your post in the Cancer Education - Lung Screening Newsfeed article (https://connect.mayoclinic.org/comment/802613/). It may be because not many members have seen the article. I thought I would respond to your private message in this discussion started by Laurie @roch. If you click the link below it will take you to the top of the discussion where you can read through the posts by members discussing brain fog associated with cancer treatments.
-- Cancer Related Brain Fog: How do you cope with it?: https://connect.mayoclinic.org/discussion/cancer-related-brain-fog/.

@lisman1408, @1nan, @trixie1313, @gingerw and others may have some suggestions or tips to share with you to help your husband.

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.

REPLY
chemosavedandruinedmylife | @chemosavedandruinedmylife | Nov 7, 2023

I am 5 years out and in all honesty my chemo brain is not getting better but worse. I'm actually a healthcare provider and I was literally the healthiest person ever, at least I thought, before my stupid cancer diagnosis. I'm using a stimulant to help me focus better for the past 3 or so years and I don't know what I would do really if it wasn't for that and my coffee. I have major insomnia which I never had before and when I say major I mean I can go sometimes 2 or more days without sleeping. My work performance even though I worked my butt off is allegedly subpar because I'm always behind. However, I will say that there are some extenuating factors that are job-related that greatly contribute. But either way, the stress of being completely exhausted when I am off of work, and the very real stress that I will probably lose my job, not be able to pay off my student loans, and be homeless

REPLY
chemosavedandruinedmylife | @chemosavedandruinedmylife | Nov 7, 2023

I am 5 years out and in all honesty my chemo brain is not getting better but worse. I'm actually a healthcare provider and I was literally the healthiest person ever, at least I thought, before my stupid cancer diagnosis. I'm using a stimulant to help me focus better for the past 3 or so years and I don't know what I would do really if it wasn't for that and my coffee. I have major insomnia which I never had before and when I say major I mean I can go sometimes 2 or more days without sleeping. My work performance is being scrutinized even though I work my butt off and always have more than 40 hours. I do have trouble concentrating and have to re-read lots of things, and my work is allegedly subpar because I'm always behind. However, I will say that there are some extenuating factors that are job-related that greatly contribute. But either way, the stress of being completely exhausted when I am off of work, and the very real stress that I will probably lose my job, not be able to pay off my student loans, and be homeless ... all converge with my cancer related crappy syndromes and numerous symptoms and wreak havoc on my mental and physical health. One of the worst things is when people just don't understand or think you just make up stuff, or when very uneducated healthcare providers act like human brain is just a myth.. actually had a neurologist tell me that it's not real and Lord forgive me but I wanted to physically harm him.. just saying. I have discussed time and time again the issues with my doctors and like many symptoms patients talk about doctors just brush it off or don't really consider what it might be like to actually have to live with these kinds of issues. My whole life is completely disorganized. Stupid post-it notes don't work because I have thousands of freaking post it notes posted everywhere. As an example, one time I had three pocketbooks. Who uses three pocketbooks at the same time? My credit that I had worked so hard on is practically ruined because of forgetting to pay bills on time. I've missed countless appointments for lots of things because I was too tired or couldn't wake up despite having 5,000 alarms set throughout the house. What can I do, I am pushing through but I can't make it like this. I don't know where to go, who to see, or if there is even anything that can be done. I've researched tons of articles and so forth and I just don't feel hopeful that any progress will be made in the near future because nobody even takes your complaints seriously so we know they're not properly reported and studied. I know that my job is trying to get rid of me even though I know but I want to do hardest workers alive. I am sure I need to ask for some sort of accommodations at work but what do I even say and what if they don't agree to anything? I just don't know what to do. I literally just get sick going to work sometimes. Im just so stressed and just out right down in the dumps. my freaking joints ache, my left chest wall always hurts EVEN THOUGH IT'S COMPLETELY NUMB where I had lymph node dissection or itches so bad that I look like I have a flea infestation.. haha . I'm always self-conscious because I feel people think I'm dumb because I literally have to ask them sometimes three times in a row what they just said. Is there anyone who can give me any advice. Please. Thank you.

REPLY
2 replies
gemjaynes | @gemjaynes | Nov 8, 2023

I have given myself permission to space out, honor my exhaustion, and be utterly useless for now. Despite 2 graduate degrees, English and Law, I often find complex reading too taxing during chemo. So I watch old B movies I've never seen before on Youtube. Or I listen to audio books. If all I can handle one day is 1.75 loads of laundry, I stop. At 63, I'm already used to having to write stuff down because my memory is not what it once was. I give in utterly to what is for now.

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 8, 2023
In reply to @chemosavedandruinedmylife "I am 5 years out and in all honesty my chemo brain is not getting better..." + (show)
@chemosavedandruinedmylife

I am 5 years out and in all honesty my chemo brain is not getting better but worse. I'm actually a healthcare provider and I was literally the healthiest person ever, at least I thought, before my stupid cancer diagnosis. I'm using a stimulant to help me focus better for the past 3 or so years and I don't know what I would do really if it wasn't for that and my coffee. I have major insomnia which I never had before and when I say major I mean I can go sometimes 2 or more days without sleeping. My work performance is being scrutinized even though I work my butt off and always have more than 40 hours. I do have trouble concentrating and have to re-read lots of things, and my work is allegedly subpar because I'm always behind. However, I will say that there are some extenuating factors that are job-related that greatly contribute. But either way, the stress of being completely exhausted when I am off of work, and the very real stress that I will probably lose my job, not be able to pay off my student loans, and be homeless ... all converge with my cancer related crappy syndromes and numerous symptoms and wreak havoc on my mental and physical health. One of the worst things is when people just don't understand or think you just make up stuff, or when very uneducated healthcare providers act like human brain is just a myth.. actually had a neurologist tell me that it's not real and Lord forgive me but I wanted to physically harm him.. just saying. I have discussed time and time again the issues with my doctors and like many symptoms patients talk about doctors just brush it off or don't really consider what it might be like to actually have to live with these kinds of issues. My whole life is completely disorganized. Stupid post-it notes don't work because I have thousands of freaking post it notes posted everywhere. As an example, one time I had three pocketbooks. Who uses three pocketbooks at the same time? My credit that I had worked so hard on is practically ruined because of forgetting to pay bills on time. I've missed countless appointments for lots of things because I was too tired or couldn't wake up despite having 5,000 alarms set throughout the house. What can I do, I am pushing through but I can't make it like this. I don't know where to go, who to see, or if there is even anything that can be done. I've researched tons of articles and so forth and I just don't feel hopeful that any progress will be made in the near future because nobody even takes your complaints seriously so we know they're not properly reported and studied. I know that my job is trying to get rid of me even though I know but I want to do hardest workers alive. I am sure I need to ask for some sort of accommodations at work but what do I even say and what if they don't agree to anything? I just don't know what to do. I literally just get sick going to work sometimes. Im just so stressed and just out right down in the dumps. my freaking joints ache, my left chest wall always hurts EVEN THOUGH IT'S COMPLETELY NUMB where I had lymph node dissection or itches so bad that I look like I have a flea infestation.. haha . I'm always self-conscious because I feel people think I'm dumb because I literally have to ask them sometimes three times in a row what they just said. Is there anyone who can give me any advice. Please. Thank you.

Jump to this post

@chemosavedandruinedmylife Welcome to Mayo Clinic Connect.I can tell that you’re having an extremely difficult time. And the doctor’s comment was out of line. You have dealt with cancer, surgery,chemo, and now a stressful job. This article talks about brain fog and mentions a few things that might help.
https://www.healthline.com/health/brain-fog#what-is-brain-fog
1. You might make an appointment with your PCP and ask them to include the bloodwork mentioned in the article.
2. Also ask for a review of your medications to determine if any of them are causing your problems
3. https://connect.mayoclinic.org/discussion/dealing-with-brain-fog/ Patients with autoimmune diseases can also experience brain fog. Check out this discussion in the autoimmune support group for some tips and hints.
4. Talk with your PCP about the amount of stress you feel and how it is impacting your job. You are a strong woman who has been through so much and now you need help
Can you call your PCP and get an appointment

REPLY
1 reply
chemosavedandruinedmylife | @chemosavedandruinedmylife | Nov 8, 2023
In reply to @becsbuddy "@chemosavedandruinedmylife Welcome to Mayo Clinic Connect.I can tell that you’re having an extremely difficult time. And..." + (show)
@becsbuddy

@chemosavedandruinedmylife Welcome to Mayo Clinic Connect.I can tell that you’re having an extremely difficult time. And the doctor’s comment was out of line. You have dealt with cancer, surgery,chemo, and now a stressful job. This article talks about brain fog and mentions a few things that might help.
https://www.healthline.com/health/brain-fog#what-is-brain-fog
1. You might make an appointment with your PCP and ask them to include the bloodwork mentioned in the article.
2. Also ask for a review of your medications to determine if any of them are causing your problems
3. https://connect.mayoclinic.org/discussion/dealing-with-brain-fog/ Patients with autoimmune diseases can also experience brain fog. Check out this discussion in the autoimmune support group for some tips and hints.
4. Talk with your PCP about the amount of stress you feel and how it is impacting your job. You are a strong woman who has been through so much and now you need help
Can you call your PCP and get an appointment

Jump to this post

Thank you so much for responding, yes I'm actually trying to get scheduled now for a two-year neuropsychological follow-up test to see if there are any significant changes from last time. I also will be calling my PCP soon. I feel like everyday needs 48 hours because I never have enough time to do everything I need to do and it takes me longer to do normal things than it used to. But, yes, I am going to try to schedule a follow up with my primary care person, I'm even thinking about requesting FMLA because from what I read it could be a potential resource at least short-term for me to follow up with doctors and just try to "get myself together " more.

REPLY
chemosavedandruinedmylife | @chemosavedandruinedmylife | Nov 8, 2023
In reply to @gemjaynes "I have given myself permission to space out, honor my exhaustion, and be utterly useless for..." + (show)
@gemjaynes

I have given myself permission to space out, honor my exhaustion, and be utterly useless for now. Despite 2 graduate degrees, English and Law, I often find complex reading too taxing during chemo. So I watch old B movies I've never seen before on Youtube. Or I listen to audio books. If all I can handle one day is 1.75 loads of laundry, I stop. At 63, I'm already used to having to write stuff down because my memory is not what it once was. I give in utterly to what is for now.

Jump to this post

I'm so sorry you're having to go through chemo, basically all I remember was that I was extremely worn out and would take a nap every time I pulled up in my driveway because I was too tired to go inside the front door. That, and everything tasting weird. Yes, I understand! I feel like I wish I had never went to graduate school because now I owe a crap ton of money and feel like I'm only 50% of the level I need to be as far as speed and recall and don't have any competitive edge if I were to seek another job. I certainly couldn't realistically see tons of patients all day at the speed that unfortunately is commonplace when they only give you 5 minutes to spend with a patient. Some days I think clearly and some days I forget exactly what I'm saying while I'm talking. And... I don't know what brain fog is.. it's definitely more like a wet heavy tarp thrown over my brain rather than a fog. I think it should be called "post traumatic chemo related brain battering that sneaks up and rears it's ugly head when you least expect it because NOBODY "really " prepares you for it.. or even understands how harsh the impact on your life is... brain." Thank God they didn't let me name it..haha..But, just like the usual people who never had cancer always say and to which I at least agree, Thank God I'm still here because there was a time when I did not think I would be and that really sucked. God bless you while you are you having to go through this junk!

REPLY
1 reply
joseph1714 | @joseph1714 | Nov 9, 2023
In reply to @chemosavedandruinedmylife "I am 5 years out and in all honesty my chemo brain is not getting better..." + (show)
@chemosavedandruinedmylife

I am 5 years out and in all honesty my chemo brain is not getting better but worse. I'm actually a healthcare provider and I was literally the healthiest person ever, at least I thought, before my stupid cancer diagnosis. I'm using a stimulant to help me focus better for the past 3 or so years and I don't know what I would do really if it wasn't for that and my coffee. I have major insomnia which I never had before and when I say major I mean I can go sometimes 2 or more days without sleeping. My work performance is being scrutinized even though I work my butt off and always have more than 40 hours. I do have trouble concentrating and have to re-read lots of things, and my work is allegedly subpar because I'm always behind. However, I will say that there are some extenuating factors that are job-related that greatly contribute. But either way, the stress of being completely exhausted when I am off of work, and the very real stress that I will probably lose my job, not be able to pay off my student loans, and be homeless ... all converge with my cancer related crappy syndromes and numerous symptoms and wreak havoc on my mental and physical health. One of the worst things is when people just don't understand or think you just make up stuff, or when very uneducated healthcare providers act like human brain is just a myth.. actually had a neurologist tell me that it's not real and Lord forgive me but I wanted to physically harm him.. just saying. I have discussed time and time again the issues with my doctors and like many symptoms patients talk about doctors just brush it off or don't really consider what it might be like to actually have to live with these kinds of issues. My whole life is completely disorganized. Stupid post-it notes don't work because I have thousands of freaking post it notes posted everywhere. As an example, one time I had three pocketbooks. Who uses three pocketbooks at the same time? My credit that I had worked so hard on is practically ruined because of forgetting to pay bills on time. I've missed countless appointments for lots of things because I was too tired or couldn't wake up despite having 5,000 alarms set throughout the house. What can I do, I am pushing through but I can't make it like this. I don't know where to go, who to see, or if there is even anything that can be done. I've researched tons of articles and so forth and I just don't feel hopeful that any progress will be made in the near future because nobody even takes your complaints seriously so we know they're not properly reported and studied. I know that my job is trying to get rid of me even though I know but I want to do hardest workers alive. I am sure I need to ask for some sort of accommodations at work but what do I even say and what if they don't agree to anything? I just don't know what to do. I literally just get sick going to work sometimes. Im just so stressed and just out right down in the dumps. my freaking joints ache, my left chest wall always hurts EVEN THOUGH IT'S COMPLETELY NUMB where I had lymph node dissection or itches so bad that I look like I have a flea infestation.. haha . I'm always self-conscious because I feel people think I'm dumb because I literally have to ask them sometimes three times in a row what they just said. Is there anyone who can give me any advice. Please. Thank you.

Jump to this post

"I'm using a stimulant to help me focus better"

Could you tell me what is the stimulant you are using?

Thank you.

REPLY
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