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.

@cgirl0721

Does chemo fog/brain go away over time?

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I can only speak for myself but I would say it did get better and maybe less of the time, but I still have moments.

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@auntieoakley

I can only speak for myself but I would say it did get better and maybe less of the time, but I still have moments.

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Thank you.

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I’ve been on tamoxifen for 5 months. The memory loss & insomnia are frustrating.

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@mmy2021

I’ve been on tamoxifen for 5 months. The memory loss & insomnia are frustrating.

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Maybe you can switch to another drug. My oncologist was willing to prescribe several.

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@cgirl0721

Does chemo fog/brain go away over time?

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@cgirl0721 Brain fog is pits, isn’t it? I had it for months after the onset of my autoimmune disease. I found this article that may be of interest. It seems to say that in a subset if people , that brain fog stays for a long time
https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/Cancer_Related_Brain_Fog.pdf
How long have you had brain fog? Is it changing at all?

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Brain fog is my middle name! It started after chemo 29 years ago. It was not too disturbing, forgetting names etc. My profession required constant focus- I think this led to chronic stress. I retired early and with time I managed ok. It worsened about 5 years ago after several months of treatment with immunosuppressive drug ( for autoimmune illness). Initially it was scary- I felt as if part of my “ hard drive” was erased. Not only was my brain foggier than ever, but I also had difficulty with performing certain activities, such as playing tennis, parking the car.
I’m 77 now and I don’t have to be sharp all the time- I need brief rest periods to recharge. I also do crossword puzzles.

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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.

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@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.

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@lisman1408 I am so sorry to hear that your family doesn’t understand how difficult brain fog is and that it’s not a choice. I included this link to an earlier discussion that had a good article on brain fog. https://connect.mayoclinic.org/comment/649496/
Maybe your husband and son could be encouraged to read it and try to understand. And show your friends, too. You really don’t want to stay home.
Could you ask your husband to go to your next doctor’s visit so the doctor can explain brain fog?

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@becsbuddy

@lisman1408 I am so sorry to hear that your family doesn’t understand how difficult brain fog is and that it’s not a choice. I included this link to an earlier discussion that had a good article on brain fog. https://connect.mayoclinic.org/comment/649496/
Maybe your husband and son could be encouraged to read it and try to understand. And show your friends, too. You really don’t want to stay home.
Could you ask your husband to go to your next doctor’s visit so the doctor can explain brain fog?

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Thank you Becky for your kind response. It’s nice to have this discussion board to talk with others who understand and have some of the same side effects! I don’t know what I’d do without my friends here!

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@lisman1408

Thank you Becky for your kind response. It’s nice to have this discussion board to talk with others who understand and have some of the same side effects! I don’t know what I’d do without my friends here!

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We are all here, and many of us have our words stolen every day too.
Brain fog is a real problem, for years there was questions about if chemo brain was a real thing. The studies say yes and they call it brain fog. If I ever get dementia, I will just proclaim “chemo brain”. Hahaha

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