Cognitive and/or learning difficulty post-chemo

horsedoc

Hi, I was wondering if anyone else has experienced these problems; I am really frustrated.  It has been 18 months since my last chemo treatment.  Most things (physically) have returned to normal, but I feel that I still have a poor short-term memory, trouble multi-tasking, and I act much more "air-headed" than I ever did before.  But my real trouble began when I started taking a course to get a certified in a new area of work.  (I'm an equine veterinarian.)  It's not that I'm having trouble concentrating or focusing, it's more that I feel like I am just not learning well, and can't assimilate the new information.  And in the testing situations, I sometimes completely blank out and can't think of words.  It seems like it's been long enough since my treatment that I should be back to normal and I'm so frustrated!  At my last session of classes I ended up crying multiple times because I know I'm not stupid and I did terribly on the written and oral tests.  (Whereas I do great on the practical portions!)  I have an appoint with the onco but it's for right after my next block of classes.  I did see my GP yesterday and she added Wellbutrin (I'm already on Lexapro for depression) and Vit. E, and is doing lots of bloodwork (still pending), and an ultrasound (since I started cycling then stopped again.)   

Has anyone else had these type of learning issues or basically still having chemo SE over a year after tx stopped?

dlb823

horsedoc, I don't think what you're experiencing is at all unusual.  I'm 3 years out from chemo, and I found reading any kind of book extremely frustrating up until fairly recently because I couldn't remember what I'd read the day before.  And while I am thrilled to be able to finally multi-task again, if there's a lot of noise in a room -- like multiple conversations going on at once -- I still get exceedingly frustrated and have to move away from the sensory overload.  And I still frustratingly blank out on names for some reason, which I think might partly be due to a lack of estrogen (not sure). 

I'm not sure what you can do about it except realize that things will get better.  It's just going to take a bit longer for all your brain cells to regenerate, so try not to stress about it or get rattled when those things happen.  And, unless your onc is different from most, they just don't seem to acknowledge these difficulties, which can also be frustrating.

I admire you for being able to function to the degree you are!  Hopefully, you'll see some additional improvement very soon.  Two years was about the turning point for me on the multi-tasking and reading with normal retention again.    Deanna

Sassa

I find that my problems occur in the areas of math and language.

Like you, I have words that feel like they are behind a 20 ft brick wall.  I can't visualize them;I can't spell them; and sometimes have problems recognizing them in written material.

I have lost math skill.  From being someone that used to be able to do differential equations in her head, I have turned into someone that must use a calculator for the simplest math.

Short term memory is shot.

It will be 5 years since I finished chemo in February.  The situation has not improved.

Many people do not realize I have the problem as they do not know the high  level I could function at in language and math before BC. 

Anonymous

I found this on Yahoo news today.

 http://news.yahoo.com/brain-scan-study-finds-evidence-chemo-brain-212523515.html

Brain scan study finds evidence of "chemo brain"

CHICAGO (Reuters) - Women who survive breast cancer after undergoing chemotherapy may also have to contend with impairments in attention, memory and planning skills, U.S. researchers said Monday.

They said women who had undergone chemotherapy for breast cancer had significantly less activity in parts of the brain responsible for executive functioning tasks compared with breast cancer patients who were not treated with chemotherapy.

Among those treated with chemotherapy, the study also found a strong correlation between women who complained they were having trouble with memory and thinking skills and actual deficits in these regions of the brain.

The study may help explain why many breast cancer patients complain of "chemo brain" -- a term used to describe foggy thinking and memory lapses following treatment with chemotherapy.

"This is a huge validation for these women who are telling their doctors 'something is wrong with me'," said Shelli Kesler of Stanford University School of Medicine in California, whose study appears in the Archives of Neurology.

Kesler said the conventional thinking is that chemotherapy drugs cannot cross a protective membrane called the blood-brain barrier that protects the brain from toxins.

And doctors have dismissed women's complaints of brain deficits after chemotherapy, chalking them up to exaggeration and stress related to the cancer.

"This shows that when a patient reports she's struggling with these types of problems, there's a good chance there has been a brain change," Kesler said.

Her study involved 25 breast cancer patients who had been treated with chemotherapy, 19 breast cancer patients who had surgery and other treatments, and 18 healthy women.

All were asked to perform a card-sorting task that involves problem-solving skills while their brain activity was monitored through functional magnetic resonance imaging or fMRI.

The women also completed questionnaires to assess their own cognitive abilities.

As in prior studies of cancer patients, the team saw significant reductions in activity in two parts of the prefrontal cortex, including one used for working memory, cognitive control and monitoring.

But they also found significantly reduced activation of an additional region of the prefrontal cortex linked with executive function -- the area of the brain needed for planning.

Women in the chemotherapy group were also found to make more errors on the card-sorting task and take longer to complete it than healthy women and cancer patients who were not treated with chemotherapy.

While a finding in 25 women seems small, Kesler said it is large for a brain scan study and points to a need to start identifying which women who undergo chemotherapy are most vulnerable to these types of deficits.

She said future studies should be done in which women are tested before they undergo chemotherapy to determine the impact of treatment on brain function.

Women are increasingly surviving their breast cancer, with breast cancer survivors comprising 22 percent of the nearly 12 million cancer survivors in the United States, according to the Centers for Disease Control and Prevention.

(Editing by Eric Walsh)

BlueCowgirl

Horsedoc, I am sorry you are still having these symptoms. Nice profile pic, btw - is that you or one of your clients? I am a Hunter/Jumper/Eq trainer and lifelong horsewoman. I think there are a lot of us here, and would love to start some kind of group...Anyway...

I am not nearly as far out from my chemo as you are, but your post made me think of this: I have taught courses in equine anatomy, but for some reason, the other day, I could NOT think of the name of the navicular bone. I mean, really? I could picture where it was, what it was, how it functions, but not the name. I was driving and I cried all the way home wondering if I could ever be normal again and what would happen if a student asked me a basic question and I couldn't answer it.

I am hoping the study referenced above will be done on a larger scale (thanks for sharing, Veggy). I am also hoping that your memory and learning skills return, Horsedoc. Cancer is a real bitch, in so many ways I'd never imagined.

susan_02143

I am now 6 years, 1 month and 3 days out from my last chemo cycle, and I finally have most of my cognitive abilities back. But not all of them. Still have trouble learning new bodies of knowledge, but am easily able to retain new skills that are related to what I already know.

All those studies that you have read about how to study and retain new information become even more important for those of us who have changed our body chemistry through the use of both chemo and hormonals. Study, then sleep. Try to be well-enough rested that your brain can focus. And retrain yourself to focus for longer periods of time.

As Blue says, cancer takes more than our breasts.

All the best,

*susan* 

jancie

Horsedoc - It just takes time for those brain cells to come back.

I remember trying to ride my horse after chemo - I couldn't freaking remember stupid things like trotting on the correct diagonal - inside/outside aids, etc.  I managed to ride for 20 min and then would be exhausted.  It took me a good two years to just get my strength back.

I am now 2.5 years out of chemo and my brain cells are starting to work again.

I am currently training my horse in the dressage discipline - she still is young and full of herself.

Pessa

When we were discussing whether or not I should have chemo, my oncologist did discuss chemo brain.  She said not everyone gets it, it might go away after chemo or it might remain forever.  I had chemo (last cycle 15 months ago) and I definately have memory and word-finding problems.  I am also on an AI, so that might be contributing.  I have not noticed any real improvement over this year.  I am sad about it and worried that things might get worse in the future(I am 60), but then I remind myself that it is better to be alive with memory problems than not to be alive (assuming that the chemo did what it was supposed to do).

horsedoc

Thank you all for writing!!!! It is so great to have this support and information.  All of you have given me some valuable information.

I was so happy after seeing my doctor last week that she was believing what I was saying, and realizing it is a "real" problems.  I see her agin on a few weeks, as well as my onco and surgeon.   I feel like although they are highly trained, they may not necessarily know how to deal with these brain changes and issues.  (So they end up telling me to "just give myself a break and not be so hard on myself.")  I agree Pessa, that being alive with some memory problems beats the alternative!

Yes Cowgirl that's me in my profile picture; that's 5 weeks after my last chemo treatment last summer, competing.  I was exhausted by halfway through cross-country buy my horse really helped me out.   (Well, he dragged me around at a high rate of speed and safely jumped what I pointed him at, haha!)  My riding is STILL not back to what it was because I'm STILL so out of shape and having trouble losing the weight I gained after chemo tx then a few months of hormone tx (Tamoxifen, which I had to stop because of how negatively it affected me.)  But I'm grateful to be able to ride.  Yes it would be cool to have a "riders" group!

 Sassa---guess where I grew up... Crystal River!!!!!  How long have you lived in Homosassa?  I moved away for good in 1991 (college) and never moved back.  I miss the area sometimes, but I live on the Eastern shore of Maryland (between the Chesapeake Bay and Delaware/the Atlantic) and the area is quite similar to the Gulf coast of Florida.

Thanks again ladies, it's uplifting to me to hear some support from others, and just to hear everyone's stories.  

jancie

horsedoc - us horse people don't know how to slow down!!!  It is totally against our nature!

I had to learn to slow down and yes...it was very frustrating in the beginning.  I had to learn to be patient with myself and come to terms with the reality of that I will never be the same as I was pre-chemo.

My horse is what got me through my treatments and why I threw everything I could at my cancer.  I did not want her to be an orphan a second time around.  She was so instrumental in helping me mentally and I do believe she understood that I was sick and just doing the best that I could so she took care of me in so many situations like an old schoolmaster would do.

I can't believe you did an eventing trial 5 weeks after chemo.   Are you crazy???

I pushed myself so hard the first year after chemo that I ended up with 7 fractures that year from 2 different falls.  I now know when I just need to stop because my legs are just too tired.

BlueCowgirl

Jancie, of course she is crazy, she's an eventer! :P 

Kidding (sort of) - you couldn't pay me enough to jump that big solid stuff! I have a HUGE amount of respect for eventers...

Not to derail, but let's start an Equestrian group here...I have a crazy busy day, but maybe tonight/tomorrow I will post something unless someone else wants to? 

208sandy

O.K. how many of you are on AIs?  The main reason I went off them was I couldn't read a book or retain a thought, couldn't watch TV except for news programs - couldn't remember anyone's names - like my siblings, friends, doctors - yes, I did have chemo brain when I was on chemo but the AIs were so much worse, things cleared up markedly after I was off them 3 months I still have some problems with words but that may be age related too (I am in my 60s).

Zinnia

This is what I love about this forum.  I also have been struggling .  I am only 13 weeks out from chemo and just finished radiation two weeks ago.  I met friends for lunch and when I related my struggles with multi tasking and concerns that I am feeling like I have adult ADD they reassured me that it does improve with time (both are over 2 years out from chemo).  I was trying to help my son with 6th grade division last night and had to turn it over to my DH.  He said "really...sixth grade math??" and all I could do was shrug and tell him it was just too overwhelming for me. Not sure he buys into the whole "chemo brain" stuff.  I find that I can usually hold my attention to one or two tasks but more than that tips me over.  Add fatigue at the end of the day and I am done.  I too am on AI's and wonder how much it is a contributing factor.  I guess I just need to be patient but it sure does add some comfort to know that others are facing the same issues. 

Texas357

I am 3+ years out of chemo, and I write/edit for a living. So forgetting common words, etc. is especially frustrating. I can't reveal this memory loss to my boss, even though she has been extremely supportive, for fear that my job would be in danger. I'm on Femara for 2-1/2 more years, then I hope to start getting my brain back on my side!

My oncologist does not believe that there are any lasting effects of chemo. He's very old-school. When I pointed out that my fingertips were still numb, that I'd lost a fingernail a few months earlier, and that I still had chemo brain, he said something else must be causing all these problems. I leave his office so frustrated and angry that he won't acknowledge the issues!

Thank goodness for this forum! You ladies help me keep my sanity.

jancie

Texas357 - fire your oncologist and get a new one.  That is absolutely ridiculous!!  What is he worried he would be part of a lawsuit because he prescribed the chemo?  Or is he that stupid?

My oncologist is going to be basically my primary doctor for 5 years and so it is important that I can talk to him about anything at all and always feel at ease.  In fact we joke every visit when I tell him "I would complain about my joint pain but there isn't a damm thing anybody can do for it" - no doubt he hears that very complaint 10 times a day.

BlueCowgirl - YES....start an equestrian thread.  We will even let those crazy eventers join us

Claire_in_Seattle

Jancie....of course your horse understood.  It was her turn to be there for you.

I don't ride (or at least not what any of you would call "riding") but I am a cyclist.  I swear that aerobic exercise is what keeps my brain functioning.  This was true prior to chemo as well.

Zinnia.....I found that it takes a full year to recover from chemo, or that is, have my "kick butt and take names" energy back.  My oncologist thought I was 100% last April.  She got that I really wasn't quite there during my checkup a month ago.

Anyway, our bodies need to rebuild at the cellular level, and it takes time to do that.  Not easy for a Type A to put up with. - Claire

dlb823

Someone posted this link on another thread today, and I thought it was pertinent to this discussion:

http://www.latimes.com/health/boostershots/la-heb-chemo-brain-breast-cancer-20111114,0,3252617.story

 

NatsFan

I agree that chemobrain does get better.  During and for a year or so after chemo, I lost nouns. I'd be in the middle of a sentence, and couldn't come up with a simple word like "rug", "kitchen", "backyard", etc.  My dh got in the habit of finishing my sentences when I'd get stuck.

Fast forward - it's now 3 and a half years since I finished chemo.  It's so much better - I still occasionally can't come up with a word, but at my age (56 next month) I figure that's normal.  Over the last year or so my dh has had to make a conscious effort to NOT finish my sentences - he'd had to do that for so long that it was a hard one for both of us to break. I'm also on AIs, and my body finally got used to it this year, and those s/e have gotten better as well.  Hard to know whether the chemobrain getting better is because of time or because I've gotten used to the AI, or some combination of both. 

Texas - agree with Jancie - you may want to check out another med onc. His failure to take your issues seriously is inexcusable.  You and he are a team, and you are the head of the team, not him.  If he doesn't listen to you and minimizes your quite legitimate concerns, then he needs to be removed from your team and you need to find someone else who will work with you as part of your medical team.  

Sassa

Horsedoc,

I moved to Homosassa in 2006 from Columbia, MD.  I know where Trappe is on the Eastern Shore.

One of the reasons my husband and I moved here is because it reminds us of eastern Long Island when we were growing up - flat, sandy with scrub pine and oaks. 

LOL - I just came back from a dentist appointment in Crystal River.

Texas357

Thanks all. I wish I could find a different oncologist. I'd love to find one who takes a more integrative approach to after-care. I want to stack the odds in my favor in every way possible. But I've done some searching, and unless I want to drive twice the distance and miss more work due to long waiting times, I'm pretty much stuck.

Cowgirl13

I'm so glad to have found this thread.  Just the other day I was talking to a friend and referred to someone and the name just wouldn't come to me.  This happens a lot and its embarassing--i'm afraid people are going to think i have alzheimers or something.  I have to go back to work but I have a lot of fear because I what I can't remember. Someone can give me a directions or something and then a few seconds later I have to ask them to repeat it.  Its been 2 years since my chemo ended and only a little over 16 months since I had my last Herceptin.  I have been on Arimidex for almost 2 years.  Oh and just after my diagnosis in May 09 I had to stop taking the estrogen/progesterone pills.  So just reading this is helping me realize that my body has gone thru a lot since June 2009--stopping hormones, TCH chemotherapy, radiation and then staring arimidex.

Thank you for posting on this topic.

And yes, I agree we need a horse group.  I rode and showed as a kid and starting back riding 7 years ago. 

Cowgirl13

Oh yeah, i couldn't remember the other one--a lumpectomy and sentinel node biopsy.

jancie

I am waiting on Blue Cowgirl to start an equestrian thread - not sure what forum to put that in - maybe "moving beyond cancer"?  In any case, once you start the thread Blue - come back here and let us know where to look for it.

BlueCowgirl

Hey, I am waiting to start the thread til after I am done w my 2010 taxes, LOL. I was in the midst of chemo when they were due, got an extension, now health insurance is demanding them immediately (I belong to a state-sponsored high-risk pool). So...I am just taking a little break because I just finished December!!! But still have to go thru another account and put it all together...Just came here to take a little break, sorry to hijack Horsedoc's thread, but I know if I start and equestrian thread now, I will spend all night obsessively refreshing it and will never get my taxes done!

jancie

LMAO Blue!

dlb823

More on that chemo brain study:

http://www.medscape.com/viewarticle/753663?src=nl_topic?src=stfb

BlueCowgirl

Hi everyone...Hope you're all doing well - I for one am pretty depressed about that chemo brain study...I mean, glad they are studying it, but so sad that this has affected so many sisters and likely me too...

Anyway, Horse thread is UP! In the "Moving Beyond Cancer" forum. Hope to see you all there!

rosemary-b

It is frustrating. I am over four years out from chemo and still randomly forget words.

Imagine having a new boss and having to pause in the middle of a snetence and finally saying "the thing". I'm sure he was not impressed.

I did crosswords during chemo to help my word recall but I don't know that it helped a whole lot.

It is easier for me to multitask and organize my thoughts so I guess I just have to give it more time.

horsedoc

rosemary, that's frustrating to have those problems with a new boss!  I do that when talking to clients sometimes (pause for a long time trying to come up with a word) and I'm hoping they don't think it's because I don't know what I'm talking about.

I also did lots of puzzles, word and number, during chemo hoping it would help.  Don't know if it did.  

The good thing is that after that visit to my doc (the day before I started this thread) I started feeling better, and am back at my class this week, and did much better on my tests. The biggest difference I noticed is that I seem to be back to learning/remembering the way I used to the last time I was in school. (10 years ago)  Which is not the "genius" type of learning but it's adequate or above-adequate (lol) so I'm not freaked out about not doing well in my class now.  

The bad thing is that although my hormone levels are normal (for a pre-menopausal woman) she gave me a Rx for a uterine ultrasound since my cycles have been weird since they started back up last spring, and they found that my endometrium is abnormally thickened.  Not so bad that they recommend a biopsy now, but just another u/s in 3 months.  I happen to have an onco appointment on Monday so I'll see what she thinks...

Outfield

Hi all.

One of the things I decided I want to do is take some riding lessons when my little girl starts.  I wanted to do that so badly when I was a kid, but we would have had to have had more money than we did to do it where we lived.  Breast cancer has made me a little selfish, but also made me think "why not?"

I work in a similar field.  I have trouble with words, too.  What it feels like to me is that if language were a map, there are bridges out.  I will know all about something, really KNOW it, but the label is somewhere I can't access.  I bet the "navicular" was similar.  I couldn't retrieve the word "fibrosis" at one point.  How many times have I said that in my life?  I'm 13 months out from chemo, and it's definitely improved.  And hopefully improving.  But other than the recent research admitting it's real, I haven't seen much about what to DO about it.  I mean, really do.  Not just make lists.

Wordwrangler

I love to cook. Today I couldn't renember my chocolate cookie recipe that I've used since was a child. Today the TV was on, people were talking, the heater kicked on, nobody was doing anything wrong but I felt like my head was going to explode. I'm 25 weeks since my last chemo infusion and my rads are done. I feel a lot better but it's baby steps. There are days I get really frustrated with myself because I can't think of name, places, etc.