Chemo-brain

harrie · 08-04-2009, 11:33 PM

The Fog That Follows Chemotherapy [The New York Times; Subscribe]

As more people with cancer survive and try to return to their former lives, a side effect of chemotherapy is getting more and more attention. Its name is apt, if unappealing: chemo brain.

Nearly every chemotherapy patient experiences short-term problems with memory and concentration. But about 15 percent suffer prolonged effects of what is known medically as chemotherapy-induced cognitive impairment.

The symptoms are remarkably consistent: a mental fogginess that may include problems with memory, word retrieval, concentration, processing numbers, following instructions, multitasking and setting priorities.

In those affected — and doctors at this point have no way of predicting who might be — it is as if the cognitive portion of the brain were barely functioning. Symptoms are most apparent to high-functioning individuals used to juggling the demands of complex jobs or demanding home lives, or both.

The chemo brain phenomenon was described two years ago in The New York Times by Jane Gross, who noted that after years of medical denial, "there is now widespread acknowledgment that patients with cognitive symptoms are not imagining things."

Some therapists have attributed the symptoms of chemo brain to anxiety, depression, stress, fatigue and fear rather than direct effects of chemotherapy on the brain and hormone balance. Yet when such factors dissipate, the symptoms may not. Recent studies that took other influences into account and analyzed how patients' brains worked before and after cancer treatment have shown that cognitive effects of chemotherapy are real and, for some, long-lasting.

Joe · 08-05-2009, 01:59 AM

The University of Rochester has been doing studies of cognative failure and chemobrain:

Latest Study

Regards
Joe

AbbyDawg · 08-05-2009, 02:36 PM

Harrie, you are an angel today for me! Can you please post Part 2 of this article when it appears next week?

I'd wait and ask you then but I know I'll forget to .... smile!!!

This is my second go-round with cognitive loss. I had encephalytis and meningitis with severe cognitive losses back in the 1990s. Was a book editor and even completely lost the ability to read. Took six years of OT to regain it. So when I got chemo brain I was not scared by it because I had been there before ... but it still affects life every day. My biggest problem is not following through on things ... completely blocking that I was even supposed to.

Thank you for this post. And thank you for this reassurance!

AbbyDawg

Sherryg683 · 08-07-2009, 07:00 PM

It is such a real thing. I felt like an idiot for 2-1/2 years following my chemo. I just couldn't seem to find the words when I was speaking. I have finally gotten better but my memory is still not the best, although it really never was. That fog is real. sherryg

KellyA · 08-08-2009, 08:00 AM

This is definitely for real. I have had significant problems since chemo, and unfortunately, it has not gotten any better with time. It involves short term memory only, and affects me everyday, enough so that I have felt the need to "explain" to people I work with and those I see regularly- not just to my immediate loved ones. I have actually gotten lost while driving to places that I have frequented often. It has, at times, began extremely upsetting. I truely feel that I could understand how it would be in the early Alzheimers stages. It is definitely worse if I am tired, or otherwise stressed, and I knowingly try to be extra prepared on those days. A pad and pencil are always by my side and I have to make a concerted effort to drop everything and just listen when people are telling me things, or I will forget entire conversations.

It has been hard for me because I was always the "quick" one in the bunch and could remember every little thing from years ago (much to my husbands dismay!). On a brighter note, my boys have noticed they get away with alot more.... "don't you remember Mom? You said I could stay out later."

Love, Kelly

michka · 08-08-2009, 01:32 PM

Harrie, this is a difficult subject because it's about our dignity. I had a terrible period towards last October when I was at the end of my one year Tykerb treatment. I could not concentrate, I was forgetting everything and sometimes I could not even understand what my companion was telling me. It was horrible. I was frightened that it may be that way forever. I just felt like giving everything up. And I tried to hide this from my family although it was stupid because they realized. I didn't even want to speak about it on this forum although I reach out for all the other subjects and get so much precious support.
Then I stopped Tykerb and my onc. made me switch at the same time from Aromasin to Faslodex. Everything improved quite fast. Like Kelly, I now know what someone at the beginning of Alzheimer must feel. Today, my brain is almost like before chemo. Almost. So there is hope. But this is one more subject the oncs. do not like to talk about. I am happy to see it is now discussed in new articles. I will never know if Tykerb or Aromasin caused that since I changed both at the same time. Or was it the accumulation of chemo and Herceptine and then Tykerb and hormonotherapy. Michka

chicagoetc · 08-09-2009, 05:26 PM

Thanks for the info. I actually was referred to a neurologist and from there to a "neuropsychologist". The psychological/neurological testing done showed definite deficits/decline.

My oncologist said it was an experiment, that he typically does not refer patients as he did me. The interactions with the neurologist and the psychoneurologist were not as smooth as I would have hoped. The best part was the "cognitive rehab" (done by a speech therapist). Many insurances do not cover this as they say it is experimental.

I'm trying to adapt to this the way I would with other vulnerabilities/weaknesses that have already been there. It's the loss that hurts. Adapting and having strategies help. Also I'm better than I was a year ago. [But maybe that's because of the Namenda? If the Namenda didn't help they were going to try Provigil as mentioned in Joe's article.]

Definitely not just stress, depression, anxiety etc though I'm sure they don't make it better. It helps to have had so many here on this forum validate the same experience.

Melanie

Barbara2 · 08-10-2009, 06:10 PM

Kelly, I could erase your name at the end of your post and put mine there. DITTO, DITTO, DITTO to all you said. I too, have wondered if I might have early Alzheimers.

My treatmemt was CEF which was in late02/early03, so I've had what should be enough time for the brain to recover. I've taken Arimidex since March of 03, so that could also be a factor. My onc wants me to take it for 10 years, and I'm afraid to ask to switch to another type in fear that it would not be effective.

I worry, a bit, that I could become very shy, socially. When speaking, I often have loss of words, and... forget about remembering names (I've lived in the same small town for 59 years...), and I feel like I'm new in town! It is safer to not contribute much to the conversation, so I won't embarrass myself.

If someone says the name of a person I should remember, I catch myself repeating the name quiety over and over, trying to recall as quickly as I can, who this person is...someone that I should know. Sometimes the person who I am talking to will say "Oh...you know so and so." Eventually I think of who they are speaking of, and yes, it is a person I know, and sometimes know quite well.

Quality of life issues. But I hate to complain much at all, because I am still here and loving life in spite of my new handicaps. Without these drugs the end of the story could have been a lot different.

suzan w · 08-10-2009, 08:50 PM

It is so good to see this subject being addressed by the medical community FINALLY! I have had many of the symptoms described by others...foggy, word retrieval, trying to even put my thoughts into words without stammering and hunting for words, easy math stuff like addition..., spelling, have noticed many 'dyslexic' moments and most of all FRUSTRATION, with doctors for not acknowledging this...my partner for getting frustrated with me because I can't express myself, but most of all frustrated with myself for not being able to get over this 'chemo brain' that no one will admit exists!!! Thank you Harrie for this post!!! XO Suzan

Barbara2 · 08-12-2009, 07:24 PM

Suzan, you are the only person I have known to speak of dyslexic symptoms. It is good to hear that this is not unique to me.

Early on after chemo, dyslexic events were very very frequent. I didn't reverse or turn around the letter itself, but I put the letters in wrong sequence. This was most noticable when writing, and has improved in time. I still do this when typing. It is best if I type with my eyes closed (which I don't usually do!) because when I watch, I make many mistakes in sequence of letters. I sometimes make verbal reverses as well, which happened just yesterday, again.

juanita · 08-25-2009, 01:58 PM

i couldn't remember the word "airplane" and it's been a few years since i finished all treatments.

suzan w · 08-25-2009, 02:21 PM

Hi again...speaking about dyslexic symptoms...today I was reading a series of #'s over the phone to a doctor's office (of all places!!) and when it came to the last 3 numbers...939 I couldn't remember what the 9 was called...it was a momentary, but very bizarre feeling, like "hmmmI know what you are, but I can't remember what to call you" I also realize that since cancer dx...everything, including mosquito bites, can take on new terrifying meanings!!! XO Suzan

Barbara2 · 08-25-2009, 08:05 PM

Today a friend and I were planning a breakfast for our Sunday school teachers; we are each making an egg bake. In an email I commented that each pan will make 12 servings, so our 23 servings should be plenty. I later read what I had written...23...that kind of stuff happens to me all the time. Numbers are worse than letters.

gypsy · 08-28-2009, 05:59 AM

I love the ariticle, and yeh I do suffer occasionally from this....but I must say, It's nice to have a name for it ( and an excuse)...it's better than one of those "senior moments"

Regards
Sue

DianneS · 08-29-2009, 07:15 PM

Many of us are also pre or postmenopausal, and the symptoms from that alone are temporary memory loss, brain fog, etc.

I actually forgot where the ignition was on my jeep the other day after a long walk. Maybe it was just fatigue but for a few seconds of utter panic I just stood there with keys dangling and didn't have a clue where they should go. Those few seconds felt like minutes.

After I had my aneurysm surgery in '06 I got used to forgetting words now & then but I never forgot where to put my keys. For me, having always been a great speller, it's hard to sit and try to remember how to spell something, and I'm not talking about big words. My husband gives me those looks that say - are you crazy? don't you remember? Nope. I'm glad to know there is a reason. I have a big question, though, about chemo brain -

I have read that the brain is a sanctuary (think I spelled that right

) where chemo for breast cancer does not go - thus some of the nasty little buggers might set up housekeeping in the CNS. If chemo brain is true, that means that some chemo must have affected the brain, right? Doesn't this mean that the blood-brain barrier has been crossed by the drugs given to us for breast cancer?

Dianne

Jackie07 · 08-29-2009, 09:03 PM

Thanks, Harrie, for sharing this important information.

I have just been told by my neuropsychologist that I should not be driving any more because I scored terribly on the 'driving' assessment she gave me.

I had resumed driving in spring, 1991, less than a year after my first brain surgery. I never stopped driving after my Gamma knife radiosurgery. I was driving on Highway to work a year after finishing my first breast cancer surgery, chemo, and radiation. I had a couple of minor accidents back then but didn't realize it was because of the chemo effect. Another onslaughter by chemo for b.c. recurrence in 2007 still did not stop me from driving. Now the verdict is in, I feel so fortunate not to have caused any injuries to anybody.

My point is that cognitive decline can be subtle and hard to detect. It's better to be tested and adjust accordingly than to wait till tragedy happens.

flynny · 08-30-2009, 06:09 AM

It is so frustrating having words or thoughts be at "the tip of your tongue". Suzan I completely agree with everything you said and I want to add that it really makes me mad when my husband tells me to "spit it out". Of course he means my words! Being so young (I say this because everyone I know over 50 say its age) and always on top of things I've let a lot go. It can really bumm me out sometimes. Its even harder when someone new I meet is listening to me be forgetful and probably thinking i'm so stupid.

Barbara2 · 08-30-2009, 09:06 PM

Diane said:
I have read that the brain is a sanctuary (think I spelled that right ) where chemo for breast cancer does not go - thus some of the nasty little buggers might set up housekeeping in the CNS. If chemo brain is true, that means that some chemo must have affected the brain, right? Doesn't this mean that the blood-brain barrier has been crossed by the drugs given to us for breast cancer?

I have wondered the same thing. How is it that the brain is so affected by drugs that are not actually reaching the brain? Anyone know?

Jackie07 · 08-31-2009, 09:19 PM

Barbara,

I am thinking that the oxygen level in our cells could be affected by chemo. When the brain is deprived of oxygen, it will not function right (it dies easily). And the fatigue, and pain and anemia caused by chemo could also have effects on our brain function.

But it is still a 'use it or lose it' situation. I have been written off so many times. I think I can prove it again this time that I can get my cognitive ability recovered. I am going to 'train' my brain to...

Because we have so many unused neurons in our brain and they can be reconnected by exercising (both physical and mental exercises.) Most people around me right now did not see how 'brain damaged' I was back in 1990-1991. Hey, just the 'talking' is making me feel good...