chemo brain

[jojo]

There is slight controversary on chemo brain; doctors either believe in it or think that it is full of baloney.

Do you believe there is such as chemo brain?

Side-effect temporary or permanent?

How long?

Please share your experiences with chemo brain, especially your timeframe until it has / had disappeared. Many thanks.

PS:

I first had chemo almost 2 years ago, and I suspect I STILL have it! :-( I remain very forgetful that embarrasses me at times, and it takes a lot more time for me to process information. My mind becomes a bit overwhelmed.

This is partial why I have yet to return to the workforce (full-time, I mean like a 40-hour job) .... even though, I have volunteered as teacher aide for several months -- currently on a indefinite break. Also, I now realize that I took my mind for granted!

And I do miss my old writing style. I could just pull up a piece of paper and write down really fast, like auto-pilot. Nowadays, my written messages are very "deliberately" done! :-(

[AlaskaAngel]

Jojo, Cancercare recently conducted a telephone education workshop on 7/12/05 titled Chemotherapy Related Memory and Thinking Changes, as part of its series on Improving Your Chemotherapy Experience. Recordings of these telephone workshops are usually available online to listen to. I attended one on this topic that they did a year ago and it was very worthwhile. Their website is cancercare.org.

AlaskaAngel

[*_Linda in Calif._*]

I had chemo 2 yrs ago, also, and I still feel the effects of "chemo-brain". Just yesterday I forgot what year it was....pulled an absolute blank....couldn't figure out if it was 2005 or 2006. I am only 53 so I don't think Alzhiemers is setting in. It just seems like my thoughts fly right out of my head...I'll be in a room and have to go back to where I started from to remember what it is I needed or wanted to do. Lists and Post-Its have become my best friends! LOL Take Care, Linda in Calif.
PS: My Onc. doesn't believe in "chemo-brain" after 6 months has elapsed from the end of treatment...shows what he knows.

[Guest]

Oh it exists!! If anyone thinks otherwise, they haven't had chemo. I had it five years ago, and it did go away after several months. I was then able to return to college and earn a degree with honors. I worked as a paralegal for several years and was as quick as a whip. I could tell you full details of every file in my department without looking. I knew the cases better than the attorneys. An attorney would ask for a client's phone number, and I could rattle it off the top of my head - amazing people with my memory. I've been receiving chemo for nine months now and can't remember my office phone number, let alone if I took last night pills. My kids have figured this out and try to use my chemo brain to their advantage...

..·´¨¨)) -:¦:-
¸.·´ .·´¨¨)) -:¦:-
((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´

[joy]

Hi jojo, I had chemo for almost a year and stopped approximately 2 years ago ( also had chemo for 4 months in 2000). During that year of chemo and ever since I am convinced that my mental function has diminished. I joke that I have "adult onset ADD", but I drive myself crazy with an inability to focus or stay on task. I also used to be the "memory queen" for so many topics, numbers, events, etc. I am not anymore. I feel very fuzzy about recent days' worth of happenings. when i was induced into menopause it was worse, but i am back to being premenopausal and it is still bad enough for me to notice and get very frustrated about. I am 37 years old and i just don't feel this is normal age related brain degeneration. I have had two sibling relatives pass with alzheimer's and my cousin and i used to joke that we should start building our double stroller now so we are ready, now i am afraid if i continue to win against stage IV bc, i might need that stroller a lot sooner. kind of irreverant i know, but it is either laugh or cry, isn't it?

thanks for putting this out there as i am completely convinced chemo brain exists and anyone who has not had chemo has no license to discuss it, doctor or otherwise. (wow, that was a little harsh, wasn't it).

Love, joy

[Lisa]

Although I can't remember who (HAH), there was a study awhile back which focused on chemo brain, a very real malady. Funny, though, that while chemo can't penetrate the blood/brain barrier to attack tumors, it affects us with chemo brain.

But you think chemo brain is bad, just wait till you have WBR. Oh my gosh, I lose words completely and my typing is now really bad. My mother and I joke that between my Dad (who has Alzheimer's), her (at 84 with some type of dymensia) and me (with chemo and wbr brain), MAYBE we can remember what we had for breakfast.

Love and light,

Lisa

[jessica]

i'd like to know how many of those docs that DON'T believe that chemo-brain is "REAL", have ever had chemo, themselves!
if i'd never heard about chemo-brain, i'd think i was going crazy...the combo of chemo-brain AND all the stress of managing this disease, it's a wonder that i remember to go to chemo every week!

[StephN]

Hey Gals -
At least we remember to check this site often!
I also spaced out my treatment one time when on weekly for mets. Also forgot another time during my every 3-weekly. I have a "daytimer" and try to write down EVERYthing there that I MUST do and EACH appt. Then the problem is to remember to check it at night before I go to bed so I don't miss an appt the next morning! I also paperclip invitations and emails that I need to answer to the pages.

"Chemo brain" may be a bit of a misnomer (as one of you stated the chemo drugs don't get into the brain itself). Chemo Fog is a good substitute. And it can take a very long time for this fog to clear once the drugs are stopped.

One of the better explanations I ever heard (or read - can't recall which ...) is that when we are on the heavy chemo drugs our red and white blood counts drop for long periods of time. Our brains need a lot of oxygen from our red cells to function well. When our blood oxygen level is lowered, so is the amount getting into that gray matter in our skulls. This causes us to feel like numbskulls!
Our hearts also pump a little faster to try to raise that blood oxygen level that our bodies are crying for. This can have the effect of causing us shortness of breath upon exertion.
So, with this in mind, is it any wonder we have these problems.

Doctors are supposed to KNOW HOW OUR BODIES WORK. If you have "chemo brain" problems just know that you are in a LOT of good company, and there are VERY REAL changes to our ability to do all kinds of things.
The worst of it will get better within a few months, but some of us have had to have chemo drugs time and time again for long periods and do feel permanently "retarded" compared to how we were BC (before chemo).

As for the being "uncoordinated" problem, many drugs affect our nerve endings and our reflexes. After all the taxanes I have had, my deep tendon reflexes are NIL. The rubber hammer gets no response. Even after being off chemo for 3 years. But my balance is better and my typing is faster and more accurate due to ... practice!

[AlaskaAngel]

I don't know why anyone who was trained in medical practice would not realize that repeated lowered blood counts lower the oxygen carried to the brain and cause "chemo-fog", but in some ways an awful lot of doctors are in denial about some of the more obvious aspects of treatment.

At the Cancercare conference a year ago I learned that whether or not chemo crosses the blood-brain barrier is more of an open question than it used to be.

From 2 experiences I had during chemo I am not sure what actually happens chemically in regard to the brain. The first experience I had happened the day after one of my treatments. I was sitting doing my work at the computer and suddenly could not see even though my eyes were open. It lasted maybe 2 or 3 minutes and then suddenly I could see. During that time, it felt distinctly like a wave of fluid was moving from the neck up through the head, ending at the forehead. The other experience was that during chemo for 1 week I lost most of the ability to coordinate my fingers with the message my brain was sending as to which keys to type, and I had to constantly make corrections. Since that only lasted one week I would think it was a connection between the brain and the fingers that was affected by the chemo.

At that same conference it was mentioned also that a drug that is normally used for ADD was being explored for use with those who have chemo brain. So there are some medical people who do realize it is real, Jojo. Most doctors don't ever have chemo so we have to be "patient" with them....

A.A.

[Lolly]

My husband and I joke that I have "Part Timers" disease, instead of Alzhiemers...some days are better than others, and it usually has to due with whether I've been over-busy, or have a lot of stress. I also used to love to read, but it's a struggle to just get through daily newspaper each day. I have to stop and re-read sentences and entire paragraphs when I realize I haven't comprehended a word of what I just read!
My theory is that the chronically lowered red blood counts actually cause a sort of brain damage from lack of oxygen to the brain.

<3,
Lolly

[Merridith]

I am 1.5 years out from chemo, and it is only now that FINALLY the worst of my chemo brain seems to be abaiting. I found it terrible!!!!!!!!!!

I was constantly "losing" words and hunting for vocabulary. I had to struggle to remember people's names when I introduced them (and sometimes avoided introducing them because I couldn't remember LONG TERM friend's names)

I had to keep a notebook beside the phone to take notes on conversations, otherwise I would forget what I had talked about. I had to write "to do" lists, grocery lists and keep an appointment calendar. All things that were completely unnecessary before chemo.

One time I actually got my groceries into the car, started it, then suddenly realised I DIDN'T KNOW WHICH DIRECTION TO DRIVE home! This is a grocery store I have visited weekly for 10 years!!!!!!!!!!!!! Talk about freaky!

I don't care what anyone says. Something happens to your brain during chemo. And I'm not sure that it goes away completely. I would say I'm about 90% of "normal", but definately not 100% yet.

They should do a long term study of this so that they can give hard data to doctors and insurance companies. I found that this problem effects my ability to multi-task and work efficiently at work.

Regards,
Merridith

[jojo]

Ladies, many thanks for your comments. Now, I have another question:

Did you have chemo dose-dense or every 3 weeks? Just wondering, if dose dense could affect chemo brain to linger longer than the conventional 3 week?

My last chemo was almost 2 years ago, just before Halloween 2003; I had 4x A/C dose dense and 12x weekly Taxol. I am hoping that this chemo fog will go away!

[Lisa]

I've had treatments both weekly and tri-weekly. I think the best you can do is have patience and wait for the fog to lift.

Love and light,

Lisa