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Chemo-brain

moniquebar
Posts: 57
Joined: Jun 2006

Hello all,

A few questions:

At the end of October, 2006, I finished chemo (Folfox). Since then I have noticed a substantial decrease in my memory. For example, I have a difficult time remembering recent conversations, and I often confuse words, both in writing and while speaking.

For example, a few posts ago I meant to write "could", but wrote "good" instead. Not a big deal, but this sort of thing is happening daily, if not hourly. My question is: how long before I return to normal? Will I, in fact, ever return to normal? I know that chemo brain has recently been recognized by the medical community to be a legitimate concern (which seems a bit of a joke as cancer patients have been discussing the affliction for years).

Thanks everyone for you input.

Best,
Monique

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Monique,

I began carrying a Palm Pilot with me everywhere. I write down everything!! All appts., tasks, birthdays, promises made - EVERYTHING because I can't remember ----, a lot of stuff. I've walked into a room, not remembering why I walked there or forgot who I was calling.

I believe that some of the "chemo brain" syndrome eventually reverses itself, but I also don't think they have done all the research to assure us of that. Anyway, my point is, knowing that I have it, I prepare for it. Now....what is it I have??? LOL

Kerry

kmygil
Posts: 881
Joined: Feb 2007

Hi Monique. I hear you loud and clear. My chemo brain is getting better the longer I'm out from treatment. During the last 2 treatments there were several times when I saw someone speaking to me, but I just did not comprehend what they were saying. It was just like the wah-wah-wah in the Charlie Brown cartoons when adults were speaking. Recently, for a couple of weeks I wrote 1973, 1979, and 1972 for the year over and over again. And although I felt competent at the time, for a while I was defintely a menace on the road. Red lights meant nothing to me until I was past them. There has been a lot of improvement, but there are still times when I feel like a dummy at work, because sometimes I just don't process information. Hang in there. I'm sure it will improve.

All the best,
Kirsten

spok5
Posts: 18
Joined: Nov 2005

MoniqueB- I finished chemo a year ago and still suffer from chemo brain. It is so frustrating! My kids actually think it is kind of funny-I don't. I totally agree with Kerry. Use whatever it takes to lessen the frustration. I carry a little notebook with me to write down what I tell people I will do or to remind me of what people tell me. I HAVE POST-IT NOTES EVERYWHERE- in my vehicles, by my bed, at work, etc- they are a lifesaver because I can have a thought one minute and it is completely gone the next. Use a calendar, mini-recorder, palm pilot or whatever it takes. People will think you are the most organized person around. Good luck!
Now what was it we were just talking about?

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Monique....

Sigh, yup....out a year from any chemo, still alive and well, living with chemo brain. I HAVE ramped up my B-complex vitamins...seems to help...ask your doc....

I also pay FULL ATTENTION when someone is speaking to me...it is not only better for hearing them, it is very couteous...makes them feel like they are the only person in the world...

(THEN I go write everything down so I don't forget....)

Hugs, (What was my name again? Where am I? WHO am I?)Kathi

CAMaura
Posts: 719
Joined: Feb 2005

Mine was worse during chemo - but I am sure that my memory has taken a nosedive...
One thing I did do straight out of chemo was to try to detox my system of the chemicals. I used chlorella. It was recommended to me and I think/hope it helped! I think it helped my neuropathy too...I should take it again as that is another lingering side effect that I have...
I think anything you do to cleanse your system of the heavy metals will help.
Hang in there you could also research what supplements really work to help brain function...I think Kathy is right that Bs are good for nerve function and there are possibly other things that a good practitioner can recommend.
Take care and know you are not alone - Maura

alta29's picture
alta29
Posts: 435
Joined: Mar 2005

same here...It will get better....I remember talking on the phone, and 5 minutes later asking my husband...who was I talking to ? I also felt very disoriented....It got better after 8 months.

moniquebar
Posts: 57
Joined: Jun 2006

Thank you everyone for your great advice and, just as importantly, the comfort in knowing that I'm not alone.

Best,
Monique

peacegift2002's picture
peacegift2002
Posts: 16
Joined: Apr 2004

After my first chemo, when I kept hearing - oh, aren't you over that? (gotta love it) I did find that re-engaging in life and work slowly recreated the neural pathways. Yes, I finally had to start using calendars - I was using 3 at once - one you carry, one I see at home, and one on the computer. And it got better.
Now that I am in chemo again, I notice the chemobrain. But I am not working, and so less engaged. Still I use the 3 calendars, write things down and now I simply tell people I am talking with I have this problem and they help me with the words. Also there is menopause, getting older and all that other jazz. Will it get better? Or do we adapt? Some of both, I think.

loisbarrie's picture
loisbarrie
Posts: 12
Joined: Jun 2007

I'm not sure if I'm actually posting or only replying here...too confusing! I finished chemo in December of 2007 and finished my radiation in Feb 2008. No one discussed chemo brain with me before my Taxol, but I sure wish that they would have. I have my boyfriend help me write out and keep my bills organized. He does not fully get this. I have a GPS to help me get around when I drive, but sometimes I cannot understand what it is saying though I hear the words. What I am finding is that it comes and goes in intensity. I"m finding that for me, I am beginning to tell when it is coming on in full force, almost like a migraine....I get really anxious. Afterwards, I'm exhausted...several days later. I have lost a large part of my vocabulary and am frustrated that there is no recovery program in that sense....like closed head injured people are often able to participate in and covered by insurance. I am practicing Qigong...and find that practiced breathing helps my clarity a lot. Now when I suddenly do not know where I am, even if it lasts for hours, I"m not terrified. I cry and I'm angry...I would have chose not to have done the taxol portion of my chemo if I had known, and I could have lived with the consequences of that. I'm a nurse, and do not know if I will be able to continue in my profession because of this. My biggest concern is that oncologists need to provide full disclosure for a truly informed consent. I feel like that was taken from me. I would like to join with others dealing with fianancial and legal aspects of this disability resulting from chemo. Everything I"ve worked so hard for in my life is at risk, and I know of little to help myself in this regard.

moniquebar
Posts: 57
Joined: Jun 2006

Thanks so much, I think that there's something to be said for re-engaging in life.

Monique

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