Cognitive and/or learning difficulty post-chemo

jancie

Wordwrangler - I call it sensory overload!  I have had issues with that ever since chemo.  I have anxiety attacks when too much is hitting me at one time or like you said - when there are too many people, too many different noises, too many questions I go into overload.

Mary-Lou

I am 6 years out, and still have trouble. Sometimes it hits at the very time I need to be my sharpest. Then I feel like a complete fool

I was a residential counselor for Mental Health. I couldn't for the life of me keep up with charting. And in a crisis situation, there is no room for error, So I had to retire from that field.  It sucks.

HUGS

horsedoc

So sorry to hear that Mary-Lou!  Yes that really does suck!

I feel as if I'm doing a little better since I started on Wellbutrin, and Vit. E, plus all the B-vits 3 weeks ago.  I still have trouble retrieving words and all that, but I do feel like I'm at least able to learn again.  Baby steps I guess.

Lumpynme

this topic has me concerned- i am 57 y.o. student working toward my 1st degree in human services-hoping eventually to masters. anyhow- took this next quarter (and possibly more) off due to beginning treatments--too many unknowns right now--at my age; its hard enough to learn w/o the se of chemo! darn!

horsedoc

Hopefully you won't have an issue with the learning issues.  I have realized also that it's really important to eat well  and stay active; that will help keep you feeling well and keep everything in your body more "normal."

comingtoterms

Hello everyone!

I haven't visited this wonderful site in quite some time, but find I need some validation right now regarding "chemo brain" - My last chemo was July 2009, but I have noticed a significant deficit recently. Here's my story: In the past few months I have started to do theatre again. This obviously requires the memorization of lines, which was never a difficulty for me in the past, but is proving to be daunting now. I struggle with what I can only describe as "empty spots" in my brain, where I cannot find myself out. They are like gaping holes, once filled with exchanges of conversation between characters, but which now, are like being alone in a snowstorm.

I sometimes am able to memorize the actual words, but often, fill in with words of my own choosing in a vain attempt to get the point across. I feel sorry for people on stage with me because I feel like I'm letting them down. So I make fun of myself. But no playwright appreciates anyone changing their words....

I was a teacher previous, but got laid off and decided to try my hand at acting again. I am a professional, so I can't be doing this! It's not community theatre!

I'm 54 and peri-menopausal now, 48 and pre-menopausal at diagnosis.Any words of wisdom?

Tammy

wrenn

I only had one dose of chemo and a year later I am unable to read. I hope it improves.

kacee311

Absolutely have had a tough time with the chemo brain...and suffering with exactly the same thing as the primary poster.  Have lost two jobs because I couldn't "learn it fast enough".  Forget the end of sentences...short term memory shot, misplace things I have NEVER done before....left purse on car roof TWICE at grocery store in one week!  Very scary.  Ended chemo in May of 2012 and still suffering...if not worse...30 months out.

Moderators

We empathise with those of you worried about "chemo brain". It must be very difficult to find such a vital organ is not functioning fully. The only comfort might be that you are not alone in this concern.

Our thoughts and hopes for some solution, are with you.

The Mods

Texas357

My chemo ended in 2009, and I suffer every day from memory problems. I used to be able to multi-task but that's gone too. I work on it every day, and I notice slight improvements. Take care of your brain through nutrition and exercise. What's good for the heart is also good for the brain.

horsedoc

Thanks for all the responses. I'm so sorry others are experiencing this too, but at least I know I'm not alone and it's a real problem. When I first posted three years ago (I just re-read it) my issues were slightly different in that I was having trouble learning and test-taking. Things kind of leveled out and I wasn't noticing many problems for a bit (1 - 2 years) but this year things are really getting to me again. My memory is awful (short/medium term memory), I can't multi-task like I used to, and I basically just feel like a big ditzy airhead. It's so frustrating, I feel like my brain has aged 10 - 20 years in the past few years. I seriously feel like I'm going to be crazy by the time I'm 65.

Texas357 I haven't been exercising as much as I should have and maybe that would help me a lot. I have mentioned my concerns to doctors and they just kinda blow it off, like it's normal again processes.

horsedoc

Interesting you mention that about books.... I used to read A LOT (ever since a young kid) and since chemo I hardly read books anymore either. I was thinking of that recently and wondering why I don't like to read like I used to but this makes sense. Grr. Frustrating.

Annie54

Hi all,

I"m 16 months post chemo and have the same problems as you describe. I do a lot of financial analysis and writing in my job and have been able to keep doing that. I do have to go over the math several times to make sure its right though! My biggest problem is the day to day stuff...remembering names, what I did yesterday or even an hour ago! It seems my perception of time is way off also. I'll think something happened a year or two ago and find out it was only a few months back. Yikes! Like floating down a river with no anchor.

I recently had a 6 month check-up with the doc and complained about all the SE's I was having.... including short term memory loss. So she is letting me have a month break from Anastrozole to see if that helps at all. Surprisingly, within 4 days of stopping the AI, a "weight" lifted from my brain and psyche and I felt much more like my pre-bc self. I knew it was hard to get through each day physically but had not realized that there was such a mental component to it. My kids tell me I seem much happier now - since they see me car dancing to the goo goo dolls when taking them to school My doc suggested I start doing easy crossword puzzles (not the NY times!) as you have to "reach back" in your brain to find the answers. She says that helps retrain your brain to access words from your memory. That makes sense to me so I've started doing just that. I'm also going to enjoy the last couple of weeks of my vacation from the AI.....sigh, still have at least 4 years to go on it but I'm going to insist on an anti-depressant to go along with it.

Annie

Kicks

Horsedoc - I know this is a bit OT, but is the grey in your avitar a hunter (show, field or both)? Maybe a Cross Country fence if you Event. Do you do Dressage?

Purppura

Hello Dears,

I too suffer from "chemo brain". I finished chemo about 8 months ago and I hope that my brain will still recover. I am 39 now, and I am a professor (math/stats). I have worked very very hard to get where I am, and I love my work. However, if my brain will not recover, there is no future for me in Academia. Learning that there are other sisters too, suffering from similar problems, is very comforting and it gives me courage. I want to thank you all for telling about your problems here.

horsedoc

Purppura, sorry you are also having issues, but you should be able to keep working. My major cognitive problems seemed to dissipate over 2 - 3 years, or I've just learned how to deal with them maybe. I do have to do some things differently than before. Write more things down. Be more methodical about some things. I used to be able to rely on my memory for A LOT and now I can't. But I'm managing.

Kicks... my horse in the picture is a thoroughbred, former event horse, but now we are doing show hunters because he really doesn't like to go fast!! He has picked up the hunters really well. I have evented for about 18 years and never thought I'd do show hunters but it's fun on this horse. (Because he's good, lol! I like anything if I can do well at it!)

Mamamule

Hopefully I can post here even though I don't own a horse. I did take riding lessons as a child...

This thread caught my attention because I too have problems with memory. I forget words or can't remember the names of things mid-sentence, I walk into a room and can't remember why, and I have to write down everything! At work I have written procedures for everything -- ostensibly so that someone else could take over if I ever got hit by a bus, but they're actually for my own use. If I don't write down how to do something, the next time I'll have to figure it out all over again. I use Outlook Task Manager to keep notes on projects, issues, conversations etc. My train of thought is like a roller coaster at Disneyland -- constantly going in different dirrections. I've definitely turned into an airhead -- a couple months ago I went into work on a Saturday and left the front door unlocked the rest of the weekend.

But here's the thing -- I only just started my chemo last week. I've been experiencing these problems for a couple years, and they seem to have intensified the past few months. This, plus fatigue, is why I initially went to a doctor last October. It's a bit of a murky area for me as I have ADD which is known to cause some of these symptoms/problems. However, I've had ADD for many years and with my medications I functioned fairly well.I thought there might be some enzyme I was missing or something, or a hormonal imbalance. The doctor didn't know, but did tell me it was time to get a mammogram,

When I met my oncologist I told him I was concerned about Chemo Brain because I already had it! He said something very interesting -- he'd been doing some research regarding whether there is a ink between these types of problems and just having breast cancer, even without the chemo. DLB823 posted a link to an article that suggest that possibility. I've heard hormone imbalance can cause these types of problems, and after a DX of bilateral breast cancer that's ER+PR+ i'm becoming convinced I did.

I hope more research is done regarding this. In the meantime, I'm learning tricks to deal with what I can.

horsedoc

Mamamule, I'm sorry you are having the cognitive issues already! I don't know much about ADD but you may be right that it is contributing to the problem. I do find the research stuff your doc told you about very interesting. I bet the hormonal issues can influence that. I get klutzy and drop things right before I get my period (although I hardly get it anymore.) So now I'm not klutzy that often I'm just a giant airhead.

I was looking at your diagnoses; how did you end up getting your Dx a month apart? Did you feel lumps or did they show up on routine mammogram? Will you be having surgery at some point? Good luck with your chemo; I hope it doesn't affect you negatively!

Mamamule

I have 2 diagnosis dates because I have bilateral IDC. Initial tumor was found on right side and confirmed by mammogram, but left side appeared clear. After diagnosis my surgeon ordered follow-up tests, including an MRI of both breasts. Something looked abnormal on the left side so a biopsy was done. It turns out the cancer on that side is actually larger and more advanced -- it's already spread to lymph node! I guess it didn't show on the mammogram because instead of growing in a mass, it's in a thin film that covers the underside of breast. I didn't even know that was possible... Scary stuff to realize a cancer that far along can still evade mammogram detection! I wonder how many women go home after mammogram thinking all is well for another year when it actually isn't...

I'll be having BMX as soon as chemo is done. I figure they both tried to kill me, so they're both out! I was hoping to begin reconstruction at same time, but now with the stage 3 and lymph node involvement I may have to do radiation. Joy....

As someone who has suffered from brain fog issues for several years, I offer a few thoughts:

• Don't rule out the use of medications. The symptoms described as "chemo brain" are similar to those of inattentive ADD, and medication may offer at least partial relief. You may want to have your oncologist work with a psychiatrist that specializes in ADD treatment as there are many different medications, and sometimes it takes a few tries to get the right combination that will work for you.
• Identify specific problems that you're experiencing and try to come up with ways to help solve them. Some of the things I do seem silly, but actually work. For instance, whenever I leave a public place I turn completely around to look at where I was just sitting. That way I spot anything I might be leaving behind, such as a sweater or a purse. At the mall I always park in the same row so I don't have to wander around the parking lot looking for my car. I also make lists and notes of everything, particularly at work. When I have to make a business call, I make a note in Task Manager with the points I need to cover and what was discussed during the call. Better yet, I put those notes into a carefully thought out e-mail that I send prior to the call. Not all of these ideas will work for everyone as situations differ, but the point is to identify the things that are most concerning to you and look for ways to make them better.
• I realize other people notice, so I joke about it which somehow makes it not so embarrassing. Because I've freely admitted it at work, people are patient when I have to pause for a word or end up using "the thingy" because I still can't recall it. They also know if they want something from me they'd better put it in writing. They're kind enough to remind me when I need to leave for an appointment. They're also kind enough to bring me the food that I heated up in the microwave and then forgot about... sigh.
• Try to not get frustrated with yourself -- it's not your fault! Hopefully your symptoms will ease over time, but stressing too much about them will just make things harder.

Best of luck to you all!

,

horsedoc

Thanks for those tips!! I have finally figured out that I really do need to write EVERYTHING down. At work I used to remember information about many of the day's appointments, then fill out the records later. Now if I have to write down even basic stuff right after it happens. I do the same thing you do with our computer program at work.. I make notes in each client/patient's records as soon as I can because I may not remember later! (that's good practice anyway.) That is a great idea about turning around and looking at places when you leave, and parking in the same place.

I started joking about it more too and it actually has helped me accept it better. I used to try to hide that my memory is bad, now I just tell people "I have a good memory, it's just short."

burlenek

I am nine years out from chemotherapy. I continue to have memory and word finding problems, but have been able to perform well in my job as a RN. However, we are now required to do telemetry, and I just cannot seem to learn to read EKG's. I am at the point where I am going to get documentation from my oncologist for a reasonable accommodation to be placed in another position because of the lingering chemo brain. It is embarrassing to admit that I just can't get a new concept, and my boss looks at me as if I am crazy. Just remember, if chemo brain continues to be a real problem, as cancer survivors, we are covered under the Americans with Disabilities Act. I have asked my boss point blank if he will fire me if I can't learn this new very complicated concept, and he just smiled. I am prepared to do what it takes to keep my job and perform as well as I can. We put ourselves through hell with cancer treatment, survived, and then have to deal with the consequences. Thankfully, this problem is recognized as a true diagnosis now.