"CHEMO-BRAIN"

KCleaver said:

Chris that sounds extreme
I had a bone marrow transplant 12 years ago with that enormous radiatioin and have mostly joked about chemo brain now that I am 56 - my short term memory is worsening but who knows if its aging or cb. I did find and have a copy of an article, several years ago where they tested breast cancer survivors vs a control group - they could measure how hard the part of the brain responsible for memory was working when the women were asked to remember something they were shown. It was determined by blood flow to this part of the brain. And the cancer patients did show significantly more effort in remembering.
I have not been looking but I have not seen anything since. I cant imagine you cant get disability - very upsetting.

I will say I have had to adapt habits, mostly writing things down, since my short term memory started getting weak. But nothing like Chris, my heart is with you.

bluerose said:

Misinformation
I just read a comment on this board in response to what you were asking about chemobrain and had to respond.

The person stated that they never heard of a person who 20 years after treatment has had chemo brain and that is just false because I am one of those people. I have chemo brain and cognitive function issues on and off and I am a 20 year survivor of non hodgkins lymphoma after having a bone marrow transplant and total body radiation. I suffer from many of the things you describe and then some but I want to add here that no two cancer survivors are never the same so what one has others may certainly not experience, too many different variables. I have also talked to many survivors who are longer term and still suffer from these issues as well.

I actually went to a Memory Clinic in one of our big hospitals here in Canada and saw a neurologist who was very familiar with the term chemo brain and assured me that it wasn't just me and that they were seeing this now with many other survivors like me. There is certainly a memory issue right after treatments but for some as years go by this does get worse and I am a living example and as I said earlier have talked to others as well, some longer and some shorter survival times than mine.

Years back they thought that chemo drugs did not cross what they call the blood/brain barrier but now they know that SOME chemo drugs do, not all is what I was told. Also radiation can have an effect on issues if the brain is radiated. It was described to me this way. It is not exactly a damage to the brain perse but the brain is just somewhat 'weakened' by some of these treatments so that normal processes such as aging for example are not tolerated as well in someone who was treated as opposed to someone who was not with chemo and radiation.

This information all came from a neurologist/surgeon who deals with Altzheimer patients and other brain disfunctions in his specialty. I think there is alot to yet be learned about the ramifications of treatments for cancer but it all comes down to the bottomline doesn't it? Weighing options - life vs side effects that are possible down the road.

When I asked this specialist about possible treatments for chemobrain he said that there was some success with antidepressants and since I have spoken with on person on this site who has tried that and for her it clearly worked quite well. The specialist also said there were some studies done saying ritalin could be of value as well. Of course you have to speak with your doctor about what he/she might think of all of this based on your own personal situation with your health and treatment plans.

Remember though EVERYONE HANDLES TREATMENTS DIFFERENTLY. Don't think that just because I or anyone else has had this happen to them that automatically you will have the same experience. No two people are the same and no two cancers are the same and no one responds or is affected exactly the same way as someone else.

All the best.

Hope this gives you some further information that might prove helpful.

Blessings.
Bluerose

Flakey_Flake said:

I Miss Me
None of my caregivers ever mentionsed any SE of congnitive deterioation. Had I known what I was to go through, I may have declined treatment. As it is I made the choice to fight, and I will fight with all I have.

Shortly after my first round of chemo (breast c - dense dose A/C) I noticed I couldn't remember things. What little energy I could muster was wasted wandering from one room to the next. I was a sutdent at the time and I would read a paragraph three times to gather what it contained, only to have it empty out of my head when I read the next paragraph. At first I thought it was just fatigue. Then I started forgetting how to do simple things. Write a check, where dishes went, how to use the can opener. This started to scare me. I was like a lost child. I knew I couldn't continue school - it was ridiculous to try. I was very scared and didn't knwo what to do. I called my onc nurse in hysterical tears, trying to telll her what was happening to me. She was actually surprised I had not heard of chemo brain or chemo fog. She said that my onc didn't put must credence in it. I called my family doc, who gave me anti-depressants. They calmed me down a bit, but didn't really do much to change it. Since then I've been put on stronger anti-depressants, B comlex vitamins and prescription folic acid to see if that doesn't help with the memory issues. I have done internet reasearch on chemo brain, but can never remember exactly whst I've read. I keep trying to do things to improve my memory - read, play puzzles, etc. I don't see many poeople. My boyfirend and my son, who simply put up with my repetitions. When I go for treatment my boyfriend always takes me, so I have someone who might remember what was said. I can't find my way from the chemo trestment area to the waiting room with out help, and I have been going there for six months. I am easily confused - sometimes when I wash dishes, I can't decide if I should pick up the cup, or the fork, or what I am supposed to do. I seem to be able to carry on a conversation with friends who call me on the phone, but am always struggling to find words. I have explained to them about chemo brain, and they seem understanding of my recent shortcomings. I am sure there are times I repeat myself, as after saying something it will suddenly dawn on me I said it before. When I email friends and family and there are several messages in the reply, I will read them, and see that I have retold things as though it were something new. The really dumb part is, you never know when or where it will strike. Sometimes I have to ponder for five minutes to remember how to pay a bill online. Sometimes I can just zip right through it. I leave car doors open, food on the counter, dishes half done, I never know what I will find. I scare me. I am afraid to drive, not because I mght hurt myself, or my car - but how would I live with myself if I hurt or killed someone else knowing that I am not at capacity to responsibly control a vehicle.

If I were an employer I certainly would not hire me. And I have a very good reputation for being a dependable worker, quick to learn and eager to tske on responsiblility. But I am no no longer that person. Will this dissapate over time? Who can say? My family doc at least will acknowledge what chemo brain is, but seems to think it will cure itself once chemo is over. I hope she is right, but there is no guarantee. In the mean time I will continue to be treated for depression, and I am seeing a nuerologist for essential tremors. I am not sure yet what his take on chemo brain is. I will ask on my next visit, but I will not be surprised if he poo-poo's the whole thing. After all, what test is there to confirm or deny chemo brain. Many of the symptome mimic depression. As far as I can remember (HA!) from reading up on chemo brain, there are no distinct markers where someone can say for certain it is chemo brain or something else. In the medical world it seems to be a very subjective topic. I am applying for disability, but will have to try for it on depression, as as far as I can tell SS Disability does not recognize chemo brain either.

I joke when I can about it, but inside I am crying. I miss me.

yarrowoman said:

chemo brain: me too!
it has been 20 years for me and i still have severe chemo brain. i too had a high IQ and 3 Masters degrees. soon as the chemo was over it was a whole 'nuther brain. trouble reading and comprehending books ..... imagine, i zoomed through 4-5 a week before! lots of mental confusion vis a vis milk in the oven, sneakers in the freezer ...slow processing speed, and the brain fatigue.........i also have fibromyalgia which has a cognitive component they call "fibro fog" so maybe that is what gives me a double whammy...also diagnosed after chemo. i have been on disability and was recently terminated so i have been doing a lot of research on chemobrain for my appeal. amazingly experts are starting to listen. my cognitive defects have consistently shown up in neuropsychological testing and also in SPEC imaging scans taken a couple years after chemo. i haven't had a very normal functional life since chemo and provigil has helped me a lot too, but no cure. i have found taking coQ 10 and omega/fish oils to be very helpful in helping my brain be less cloudy. I found 3 major researchers who have written books and data and read about some newer PET brain scans that seem to substantiate the brain changes. i think they have to be specialized scans...my onocologist says....i am patiently researching that now....
google these names: Dr. Daniel Silverman, UCLA
Dr. Stewart Fleishman, Beth Israel Med Ctr. New York, NY
Mark Noble, U of Rochester

they have contributed significant data toward this problem. we do need more.....in the meantime...can someone make the login password easier for me to remember? ; )

rathgirl said:

wow. reading everybodys
wow. reading everybodys comments about chemo brain explains a lot of things to me! i thought it was just me too. ok and now i know what to kinda expect in the future too. thanks!

sea60 said:

Yes, have felt that
I thought it would go away but I still struggle to remember words sometimes in mid-sentence...how embarassing!

Blessings,

Syl

EJmauldin said:

the words just won't come out
I don't know how many times I stand there just trying to say something, knowing what I want to say, and the words will not come out of my mouth.
I didn't know chemo brain was real.
I thought it was just me.
Now I am falling apart. Arthritis, chemo brain, what next?
I can laugh at it.
I get confused easily too. I will mix up days.

I was always good at knowing where everything is, now I write down alot of things, I have to check the calendar all the time. I have payed bills twice, and still don't remember paying them. I double check my bank account so it dosen't over draft. Hopefully this won't last to long. It's hard to let other people have control over my life, remind me what I need to do today, or did you do this yet?
So far I keep it all going. I just notice every once in awhile I am mixed up. Thank the good Lord I have a great family and friends that help me. (keep me straight) They don't let me go wrong, and call me to make sure I've done what I should have. I have had less problems since my 2nd round of chemo treatments has been finished for 2 months.

Thank you all so much for sharing this, It helps to know others are having the same
problems.

Eileen

carkris said:

Chemo brain is very real. i
Chemo brain is very real. i have it but it is getting better. so there is hope!!

yarrowoman said:

chemo brain: me too!
it has been 20 years for me and i still have severe chemo brain. i too had a high IQ and 3 Masters degrees. soon as the chemo was over it was a whole 'nuther brain. trouble reading and comprehending books ..... imagine, i zoomed through 4-5 a week before! lots of mental confusion vis a vis milk in the oven, sneakers in the freezer ...slow processing speed, and the brain fatigue.........i also have fibromyalgia which has a cognitive component they call "fibro fog" so maybe that is what gives me a double whammy...also diagnosed after chemo. i have been on disability and was recently terminated so i have been doing a lot of research on chemobrain for my appeal. amazingly experts are starting to listen. my cognitive defects have consistently shown up in neuropsychological testing and also in SPEC imaging scans taken a couple years after chemo. i haven't had a very normal functional life since chemo and provigil has helped me a lot too, but no cure. i have found taking coQ 10 and omega/fish oils to be very helpful in helping my brain be less cloudy. I found 3 major researchers who have written books and data and read about some newer PET brain scans that seem to substantiate the brain changes. i think they have to be specialized scans...my onocologist says....i am patiently researching that now....
google these names: Dr. Daniel Silverman, UCLA
Dr. Stewart Fleishman, Beth Israel Med Ctr. New York, NY
Mark Noble, U of Rochester

they have contributed significant data toward this problem. we do need more.....in the meantime...can someone make the login password easier for me to remember? ; )

VickiSam said:

According to my well known Oncologist here in Southern
California .. there is 'no' such thing as chemo brain. Sad ...