Chemo brain?

rozem

I did a quick search but couldn't find much on this topic...

I am 3 years past diagnosis (yay!) and it will be 3 years in December that I finished chemo.  I still struggle with some cognitive issues that I thought would be resolved by now.  Some are so minor that you could attribute to just getting older but it is nonetheless very frustrating not to mention scary.  I used to be so sharp and could remember the smallest details ( I was a buyer for years and could remember all the costs/margins going back years if you can believe it).  I have found since finishing chemo that:

1) I forget things easily, for example If someone gives me directions, if I don't write it down I forget it within a few minutes

2) find it hard to find certain words to complete a sentence or thought

3) feel foggy/unable to concentrate on a task.  (this is a big one) 

4) easily distracted

it has gotten better but I do not feel the same as I was before treatment.  I am trying to "use it or lose it" and have been picking up more books/newspapers etc and forcing myself to exercise my brain more.  I have decided not to go back to my old career because of it (sad), I just don't feel I can do the job (which requires a great memory and sharpness) anymore. 

Anyone else?

what are you doing to help yourself? suggestions?

Moderators

Hi Rozem!

We're sure this will get tons of responses and suggestions to help manage your chemo brain! In the meantime, you may be interested in checking out the main Breastcancer.org site's page on Memory Loss.

There's also a helpful Ask-the-Expert Conference on Managing Chemo Brain.

In addition, quite a few Research News Stories on this side effect.

We hope this helps you and also helps fuel this discussion!

--The Mods

Marple

rozem, there is lots of info on these boards about chemo brain.  Unfortunately at the moment the Search option in the upper left isn't working.  Hopefully when it's going again you'll find lots right here.

Are you on Arimidex?  I found after I'd finished with that the brain fog lifted. 

voraciousreader

Rozem...try not to beat yourself up about your lack of memory. I didn't have chemo and have noticed cognitive changes as well.  A few months ago, The New York Times published an article regarding a recent German study that suggests "An Older Mind Might be a Fuller Mind.". I shared the article with my 89 year old mom who bless her is still a voracious reader!  What the researchers suggest is that those of us who have stored in our brains a rich vocabulary, it takes us longer to find words.  They suggest that other tests that try to test older people's memory are no good. Those tests that try to quantify memory loss might not be using the right quantifiers.  I'd like to further suggest something that I've noticed with myself.  My attention to details is taking a backseat and affecting my memory because I've become addicted to getting those details via my fingertips rather than punish my brain by remembering things.  Recall a day when we had to remember our loved ones and friends' phone numbers? We don't need to do that anymore, nor does the generation that has been brought up with smart phones.  Directions? Ha!  Who needs to remember directions when we all have GPS in our smart phones!  Recently, when I told a twenty something year old to meet me outside of the airport, UPSTAIRS at DEPARTURES, she was totally confused!  Up, down, east side, west side, they haven't a clue!  What's more, I starting to become like them!

To keep our memories sharp, Mom and I read the same books and talk to one another every day.  Seems our conversations run all over the place.  Present, past and future.  Current events and literature too.  We give each other a mental work out each day.  Perhaps you can do the same.  I'm also a literacy volunteer.  Helps me think and helps me be a better speaker and writer.  

Perhaps some of my ideas might help you....

lintrollerderby

Rozem: I'm so sorry you're dealing with this. I struggle with this myself. I had such a sharp memory before chemo; I could remember details of things that people couldn't believe. I never needed a shopping list. Shortly after chemo began, I noticed a huge drop in my cognitive functioning. My short term memory was almost non-existent. If someone told me something and I didn't write it down, I'd forget it almost immediately. I also started having trouble with word recall and concentration. Everyone will occasionally forget a word while speaking, but this feels different. I can tell when I forget a word like everyone else does (the same that happened before chemo), but when it's related to chemobrain, there's no other way for me to describe other than it just feels like it's different. I get easily distracted since chemo and that was never a problem before. My local MO after treatment (not the one I saw for chemo) said she sees it a lot with certain chemo combinations such as mine which was Cytoxan and Taxotere. She suggested Ritalin or Adderall to help with fatigue and concentration. I tried and they do help tremendously. I've read several studies on chemobrain and one in particular shows that for many who've received chemo, there's actual measurable brain shrinkage. For some, the brain returns to normal, and for others, it does not. I'm just under 3 years PFC, and while I've seen some improvement (and I've learned certain workarounds to help cope with my brain functioning differently), there are still a lot of deficits and problems post-chemo. 

There are a few books on the subject. It used to be shrugged off as myth, but there are many studies now to show how the brain is changed in many chemo patients. Of course, we all have issues as we age, but as I said before, if it's a chemo-related problem, it feels different and it usually has a more sudden onset. 

I now make lists for everything. I carry a small notebook with me everywhere to write down ANYTHING I might want to remember later. I also found that medication does help me more than I thought it would. 

I'm sorry this is affecting you, but please know it's very real.

Marple

Lintroller, very well said.  The hospital where I had chemo did a study in to chemo brain.  Yes, it is very real.

lintrollerderby

Thanks, Marple. It helps when people (including other patients, as well as doctors and researchers) acknowledge it exists. We, as people living with the problems, can feel and notice the difference, and it feels nice to have it acknowledged. 

I posted this post and the last one from my iPad, but when I'm on my laptop later, I'll post some links about chemobrain for anyone interested.

rozem

thank you mods/ladies

lintroller - I do feel very alone in this some days, Ive actually had friends get upset at me because I have forgotten a coffee date/birthday/special event etc.  I usually set the date in my phone but sometime I even forget to do that if I don't do it immediately! my brain absolutely functions different - and you are right, it just feels different then before C when I would forget something.  I had FEC-D chemo which includes the same 2 drugs you had. 

My doctors never told me this could happen - I mean when you are fighting for your life I know this is the last thing you think of and I would never have refused chemo (being her2 grade 3) but boy does it mess with your QOL. 

treatments really do leave you with so much collateral damage

I really don't want to go on any drugs tho - interesting about the fatigue, is this related?  im tired ALL THE TIME

I would love to see those articles

Marple

Roz, I learned to say, "oh yes, NOW I remember, I'm so sorry"...........when I really didn't remember but as you just said......friends get upset.  As for missing dates.........I'd say I simply forgot to write it down and with so many medical appts. (that I had at the time) if I didn't write everything down right away, I'd forget.  I learned to apologize profusely even if I didn't really mean it. 

As for fatigue, I needed daily naps for years following tx. 

Marple

I also weeded out a few high maintenance 'friends'.

wrenn

i was referred to a neurologist a few years back ( pre cancer) for "cognitive decline".  The neurologist tested me and said it was stress related and would improve.  It did. Cancer and treatment has put me behind again. I can't imagine the stress going away (fear of recurrence) but hopefully it will diminish.

I also think i have developed concentration problems from my internet addiction. Flitting from one task/site to another and immediately googling instead of thinking.

Brains are going to look very different in a few years.

voraciousreader

wrenn....neuroscientists are seeing changes in the brains of college students compared to college students 30 years ago.  I first read about this issue a few years back in Jean Twenge's fabulous book, Generation Me.  It was mentioned again in Kevin Dutton's book, The Wisdom of Psychopaths.  What researchers are learning is that the area of the brain that helps us feel emotions is declining in activity.  Some researchers believe this is occurring because younger people are NOT developing a rich education filled with literature.  Students today are not doing reading on a level that ONLY literature can invite, and that is, being "touched" by a character.  Students today want information and they want it now.  The neurons in their brains are being wired differently than ours with future consequences that are presently unknown.  Thankfully, our government along with several other countries, have monetarily committed themselves to brain studies.  While I'm excited that this type of research is FINALLY getting the attention it needs, that doesn't mean it comes without controversy.  Remember how at the turn of this century every one was so excited about mapping out the genetics of humans?  There was major hope that that discovery would QUICKLY lead to better understanding of diseases and treatments.  Hmmmm,..

One more thing....while researchers continue to study memory issues....regardless of how we all get deficiencies, I think there is so much that each of us can do to keep whatever memory we have and help us all function ...or at least try to reduce the frustration of our lack of memory.

In addition to the suggestions that I previously made, I think we should not under estimate the power and the importance of smart phones in our daily lives.  I no longer jot things down on paper.  Everything I need to know is stored in my phone.  And when my memory is really taxed, I use the camera and take pictures of what I need to remember.  The reason why they call smart phones smart is because they really are smart AND THE MORE YOU USE IT....THE SMARTER IT GETS!

I teach that concept to my literacy students and friends.  I tell them that the more information they look for on their smart phone's internet, the more the computer in the smart phone remembers YOUR MEMORY.  So, the next time you are looking for something that you have already looked for, or something brand new, the smart phone will help you find what it is you are looking for....faster and better than if your own brain is trying to find it!

I wish everyone well!

Marple

VR, you are absolutely correct.  There are many coping techniques everyone can use to aid memory. 

rozem

thanks VR,  great post as always

I almost find that everything I had stored BEFORE chemo I can remember more easily its the after info that I am having issues with.  For example my BF moved right after I finished rads and changed phone numbers, I still cant remember it, I have to look at my phone.  My other GF's numbers I can remember - weird

robo - it is scary but you are not alone !