Chemo Brain: Just wondering if anyone... - SHARE Metastatic ...

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Chemo Brain

Birdee
Birdee

Just wondering if anyone is troubled with chemo brain. I struggle when speaking to someone, can't remember names or what items are called. The people at work are great and try to fill in the blanks for me but its frustrating. I can do something and few seconds later cant remember.

I have chemo related neuropathy in my hands but medication is helping me however l lose my balance very quickly. This is side effect of Gabapentin but thinking perhaps nerve damage

Any thoughts?

61 Replies
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Not sure what brain I have. Have had Abraxane 5 years ago and now another one (see?). I am 67 no history dementia in family and parents were very sharp esp father and his family. But, I am having some minor recall with names of people I haven’t seen in a long time. My husband however, who is younger and relatively healthy, is worse. I recommend green juices. I believe it helped with neuropathy and although there are times I feel like a dullard, I can still match wits with the best of them lists are my friend, as is a calendar. Don’t underestimate the stress you’re under emotionally. That can reek havoc with memory also💕

Birdee
Birdee
in reply to nstonerocks

Thank you for the reminder about stress. I always forget .

nstonerocks
nstonerocks
in reply to Birdee

I’m sure there’s no pun intended there. Yes, we tend to not count or ignore how much stress we are under. It should be right up there with our other signs and symptoms.

Birdee
Birdee
in reply to nstonerocks

I always forget the stress part.

I struggle with some words/names too Birdee....I can almost see them, often know the first letter but they just won't come out....until 5 minutes later when the conversation has moved on! I noticed it after my diagnosis but before I started any chemo so I also chalked it up to the unrelenting underlying stress of living with MBC.

Can I ask what medication you are taking to help with neuropathy?

Thanks!

Patty

Birdee
Birdee
in reply to MacroMom

I take both gabapentin and pregabalin for better control of the pain and it works really well. If your doctor pulls a face (be cause you normally only suppose to prescribe one) Tell him a study was done on this very subject. Participants felt much better control with the two medications. The people running the study also realized the patient needed smaller doses of each which reduces side effects. The throbbing pain that would wake me up at night has completely gone

My GP realizes its z quality of life issue and has decided to let me have both. Sorry l know l go on and on but hope this helps. PS If your doctor gives you guff give me his number.😁

MacroMom
MacroMom
in reply to Birdee

Thanks....especially for the offer to go head-to-head with my doctor! :-) Luckily she is very amenable to my requests and willing to go to bat for me if I need back up on getting something approved. I'm just getting the first hints of neuropathy (I've had 7 rounds of Abraxane). I'm doing what I can to prevent it but also hoping to stay on this as long as possible so I expect some neuropathy will be inevitable. Good to know their are options to relieve the pain!

Birdee
Birdee
in reply to MacroMom

Yup me too that's how mine started. Please tell her about the 2 drugs in my opinion it gives great pain control. However fingers crossed for you that if doesn't progress.

I start Chemo next Wednesday but I have had the brain fog from the beginning. I saw the oncology psychiatrist and he prescribed Vyvanse and it helped a little. I could take a much higher dose but I take so many meds I didn’t want to increase it in case Of side effects. He called it cancer brain, between the drugs we take for cancer, pain meds, radiation we do some damage to our Brain not to mention the stress we are under.

MacroMom
MacroMom
in reply to Sarcie

Hi Sarcie; I hope you had a good meeting with your doctor on Monday. Do you mind sharing the name of the chemo you'll be starting next week? It always helps to know what options are out there. Thanks!

Patty

Sarcie
Sarcie
in reply to MacroMom

I will be getting Abraxane (nab-Paclitaxel). My oncologist answered lots of questions and gave me a lot of brochures to read.

Birdee
Birdee
in reply to Sarcie

As long as your comfortable.

MacroMom
MacroMom
in reply to Sarcie

Sounds like he/she is on top of things! Several of us here are on the Abraxane train too; hope you have an easy ride with it. I'll have my 8th IV next week and am finding it very tolerable and effective.

Sarcie
Sarcie
in reply to MacroMom

I’m glad to hear that. You are getting the same drug? Are the side effects manageable ? I was told the side effects eased off after a week and don’t last the whole month.

mariootsi
mariootsi
in reply to Sarcie

I wish you well on Wednesday!

Hi Birdee,

I can definitely relate to your frustration.

I noticed a pretty severe decline in my "brain" immediately after I first did hardcore chemo 10 years ago. What stuck out to me most was the loss of mathematical/analytic skills... My ability to do "head math" was was dramatically worse and even thinking through how to solve problems or understand numbers/logic was reduced. So there's no doubt that the chemo caused that....It's almost measurable...I wish I had taken a test pre- and post-chemo.

Now that I think about it, "they" should do this!! Discussions of chemo brain seem to be purely anecdotal...are there actual studies? (I just found some but they're based on self-reported data...why not just ask volunteers to take some tests?)

Anyway, my memory has also declined, including my ability to access my vocabulary, names, dates, etc. It's a nuisance, for sure, and frustrating.

I just remembered a snippet of a poem I like (one of like three poems that I remember at all!) that relates... After chemo, I remember sitting in my office working very hard (too hard) to try to memorize it - it's very useful/quotable - which I thought was sort of ironic!

It's read with some humor (I've gone to see the author, Billy Collins, read) called "Forgetfulness"....

"The name of the author is the first to go, followed obediently by the title, the plot, the heartbreaking conclusion, the entire novel, which suddenly becomes one you've never read, never even heard of.

It's as if, one by one, the memories you used to harbor decided to retire the the southern hemisphere of the brain, to a little fishing village where there are no phones".

I don't remember the rest, just that it has some funny lines re: the quadratic equation, state capitals (I think?), etc., then turns a bit un-funny...

Sorry for the meandering response...My brain is definitely not working this morning, even after a good dose of caffeine!

Take care,

Lynn

Birdee
Birdee
in reply to LynnFish

No worries, if your brain was meandering l didn't notice and went along for the ride. I love the fishing village with no phones image , so accurate.

LynnFish
LynnFish
in reply to Birdee

Yes, I like that, too! Plus the book thing...my gosh! I have so many books I know I've read and I remember nothing from them! I should save money and just re-read them!

Lynn

Maybe fact and figures elude you, but your imagination and powers of expression are on fire!

Thanks! But I think maybe you're giving me credit for Billy's words... :)

I follow your posts. You definitely have a gift for words

Oh, wow, thank you! Your compliment has made my day! :)

Barbteeth
Barbteeth
in reply to LynnFish

I’m exactly the same with books...I can remember in great detail the books I read ages ago...however I forget the recent books I’ve read and sometimes I’ll peek inside to jog my memory and then it all comes back!!!!

Very annoying as I had an amazing memory...I think it’s a combination of medication stress and just getting older...my husbands memory is atrocious!! and he takes no medication whatsoever ...we’re both 66 now

Before the Covid-19 thing we went to the cinema most weeks and I used to write in my diary what we’d seen because neither of us could remember from one week to the next so it’s not just the drugs

Barb xx

mariootsi
mariootsi
in reply to Barbteeth

I can't remember what I'm reading either.

Barbteeth
Barbteeth
in reply to mariootsi

It’s annoying but who cares...I don’t

Can still manage crosswords codewords and sudoku which I do every day

Just been riding in the woods and it’s quite easy to lose your bearings as the paths look very similar but Bugsy knows the way back so I won’t worry about that one...hasn’t happened yet!

Barb xx

mariootsi
mariootsi
in reply to Barbteeth

Oh good!

PJBinMI
PJBinMI
in reply to Barbteeth

I'm glad to hear that you are back to riding! My days of riding ended when I left home for college but my memories of those times are wonderful and I kinda envy you for still being able to get up on a horse and go........ So much we c ould do when we were younger.........

LynnFish
LynnFish
in reply to LynnFish

Oh! One upside to chemo brain/mild memory loss...I often tell my friends that they can tell and re-tell the same stories and I'll be surprised/laugh/etc. each and every time! :)

Barbteeth
Barbteeth
in reply to LynnFish

And you can read the same book over and over...saves buying new ones all the time!!

Barb xx

Hi there.

I have exactly what you subscribed. I am a year off chemo and am now on the Ibrance 125/Letrozole/zolodex regimen. Here is how I cope.

I take classes with work and have to study and take tests-— so this really concerned me. I found this great YT video and it’s made me feel better. Search —> “Cancer transitions:brain fog” it’s a dr from Alberta. I am also more alert in the AM so I work around that.

My speech has gotten much better since infusion but I still stumble. It’s ok though I just concentrate.

As far as remembering: note pad and notes app on my phone are great oh and Alexa too haha.

All the best :)

Tara

Birdee
Birdee
in reply to Ski2sea

Thank you. I'm gonna check out that video.

Puppy_love
Puppy_love
in reply to Ski2sea

Do you think the brain fog is from the Ibrance, because I feel like I’m in a cloud everyday at work.

Birdee
Birdee
in reply to Puppy_love

I suspect you are right. No doubt a contributing factor.

I am having horrible memory problems and I mean short short term, forget what I ate yesterday. I take Ibrance and anastrozole. I have always been sharp and quick, now I am slow and forgetful, true I am no spring chicken, but I am not an old hen either.

Same with me it’s annoying to not remember things. I just feel very fogged out. I’m on Ibrance and Faslodex.

Me too!

Correction “Calgary” Not Alberta

Gabapentin has a long list of side effects, some quite alarming. I'd read up to see if that's what's causing the dizziness.

My chemo brain seems to have got better over time. Though I still have times when I cant remember names, however, I had that problem before I started chemo. A lot of friends my age suffered from it too so I guess some of it is age related.

Don't worry too much would be my advice , just laugh it off.

Re neuropathy. I have a minor issue with this in my left hand but its manageable. I hope yours improves with the medication.

Best wishes x

Hello sweetie

Everything is gonna be alright 😘❤️❤️❤️

I am sending you positive vibes and thoughts. Why don't you ask your doc? Maybe its from the chemo. Maybe beacuse you are tiring from the situation, maybe from the pills. Many kisses

You are so very kind thank you.

I’m just on Ibrance and an AI and I can’t remember names or the names of things. I can give you the dictionary definition and still can’t come up with the word. I’m 72, so some of it is probably old age but it got much worse after I started Ibrance. If I’m in a group talking about a certain subject I have to run sentences through my head to make sure I have the words to say what I want to say and I’m not doing the you know what or what do you call it dance! And some days I’m fine. I think the amount of sleep I get has a lot to do with it. There isn’t any senility in my family history. I feel like it is just part of life with MBC.

Elaine

Puppy_love
Puppy_love
in reply to Red71

I’m 61 and my brain has been mush since Ibrance. I can’t remember or find words either. I am smart with some things but maybe it’s the pure exhaustion from this med that makes my brain sleep.

I had it after my first chemo. Some days I’d struggle to find words, couldn’t read to the end of a sentence and would look at light switches and taps and have no idea how they worked. But it gradually went. Good days increased and I got completely back to normal.

I had it a little during my last iv chemo but it was more a sense of confusion, disorientation and forgetfulness, but that was improved by drinking more.

A funny story about chemo brain - though I hope it’s funny. I’d gone back to work after my treatment for primary breast cancer (probably too soon) and chemo brain was still there but I was trying really hard to get back to normal. I’d avoided meeting for the first 6 weeks but I had a meeting that I couldn’t avoid with the head of IT and his team and it was going to be a tough meeting, They didn’t want to do what i needed and I’d got to persuade them. I went into the meeting, I had notes with my objectives and arguments and the meeting went really well. I didn’t forget how to speak and I could read my notes and I got everything agreed. At the end of the meeting, feeling very pleased with myself I took my leave, got to the door, looked at it and realised I’d got no idea how to open it. My mind was a complete blank. I looked at the door handle and knew it should be easy but couldn’t work it out. So I just stood there staring at it. The Head of IT, who didn’t know I’d been ill, must have thought I was being precious and was waiting for him to open the door. He got up, apologised and opened the door for me! As soon as the door closed behind me, I ran all the way back to the safety of my office. My colleagues thought it was hilarious and we had a really good laugh about it, and that is the best way to deal with it. Laugh at the silly things and remember it’s not permanent. You will get back to normal 😊

Birdee
Birdee
in reply to Julie2233

Thank you for your words and l loved your story. I wonder if made the IT fellow feel very gallant :).

LynnFish
LynnFish
in reply to Julie2233

OMG, that IS funny! In the far recesses of my mind, I think I feel a similar memory...not a door, but something very basic that just stopped me in my tracks! It sounds like you'd mustered and used all of your brain power for the successful meeting and you were just DONE! Nothing left! :) It's great to be able to laugh our things/ourselves! :)

mariootsi
mariootsi
in reply to Julie2233

Omg! Lol. I hear ya!

My main problem right now is to be extra-careful with knives and scissors until the Benadryl wears off - my fingers keep getting in the way!

Had to chuckle. I'm not allowed to use sharp things on my kitchen any longer. My ninja chopper works great for most things.

LynnFish
LynnFish
in reply to urthmothr

Oh, that's funny! :) I'm similar with the oven....I've stuck a note on it that reads "set timer" because I often forget I'm cooking something until after I smell it burning! :)

Lots of thoughts dear fellow warrior. Yes I have some chemo brain, unfortunately a common side effect. My kids sometimes get impatient with me, I remind them that it's not my fault. I don't really know what to suggest, aside from try to stay active (it probably helps the brain), stay positive. Hugs send to you.

LynnFish
LynnFish
in reply to SusieIM

SusieIM, I do similar with my "kids", explaining that "my mind is MUSH!!". With my nephews (young), I've told them so many times that I now have oatmeal where my brain used to be...When I can't remember something (e.g. their NAMES!!!) I ask "What's between Aunt Lynn's ears?" and they respond "Oatmeal!!!!" :)

I take vitamin B for neuropathy and the gabapentin at night. I definitely have chemo brain. I was admin for my husband's small medical practice. I knew it was time to quit several years ago when I sent someone a signed blank check. 🤡Fortunately they called to let us know.

OMG, everyone's chemo brain stories are making me laugh this morning!

I feel like I can’t remember much. I have become the post it note queen. I do think stress has a lot to do with it.

I found that when I was getting chemo, I had the same issues.

Be kind to yourself and take your time in speaking. People were generally empathetic to my chemo brain.

I also think the stress of all of this takes it's toll. Hard to focus and remember thinks.

Writing everything down helps me!

I do a mental exercise every night when I go to bed, I try to remember what I had for breakfast! I kid you not. Trying to remember names of flowers takes me days, the list goes on and on. I was a whizz at crosswords, now I find them extremely difficult. Dear Birdee you are definitely not alone. Xx

I think your bed time exercise is a great idea. It helps immensely knowing that other people are going through the same thing.

It did happened to me too. It was really bad after radiations treament past year but now my brain is doing better.

for me, i consider the following factors: 'stress,' fatigue, and/or (unresolved or current) grief, also; a comorbidity.

All excellent points.

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