cognitive/memory loss

7fergie · June 2003

Had focus, concentration, memory loss during chemo and got worse as treatments went on. I expected it but it's really bad--I missed a bone density test in early June because I forgot about it and I had it written down. These skills weren't the greatest before chemo but now I've gotten to where sometimes I can't trust my memory and I'm really stressing about it even though I know it will get better with time. How much time and will any of it be permanent? In general I am stressing more than during chemo and my memory loss isn't helping. I'm in medical menopause, just started Arimidex mid-June this year. Had 6 rounds of CEF(cytoxan,epirubicin,5-FU).

bullfrog13 · June 2003

Dear 7fergie
I can so identify with your concerns. I have been off chemo treatments for ALMOST a year (will be a year end of August) the memory has gotton somewhat better. I had cytoxin, and F5U and something else of which the name I CAN NOT REMEMBER!

It is a scary thing to not be able to remember things that you SHOULD. I got lost one day going to the Doctor -(which i did every week for 18 months)was in a parking lot- lost as could be only 3 blocks away- called my husband at work in tears because I could not find my way.

I FORGOT my OWN childs middle name- and it's the same as mine- but could not make the connection!

I would forget words of things. I got so MAD one day because I could not remember the word ''light bulb'' and screamed at my son to "get one of those things that makes the lights come on!" He just looked at me wierd and asked ''you mean a light bulb?".. I yelled at him "YES!" It was very tramatic for both of us.

Well I now remember words for things I had forgotten this time last year, and I rarely get lost anymore, and my daughters middle name is KATE.. see it gets better
Much luck and God Bless
Jerilyn

hummingbyrd · June 2003

Hey fergie I got on to write you a note, but can't remember what it was about.......LOL

I know it's not funny, but better to laugh than cry. I can't say my 'cheeeeemoooobrain' has gotten any better. I rather think I've just adapted. I have notepads EVERYWHERE! I even have notes for my notes. LOL I'll go from one end of the house to the other and by the time I get there I've forgotten what I was going after. Usually though, if I stand there, and look around, the 'light bulb' comes on.
You wouldn't believe how many haircuts I've missed. My hairdresser now calls me to remind me of my appointment. She called one time and I answered, 'hey girl, I remembered this time, I'll be there tomorrow at 4:00'. She said, 'Your appointment is today.' OOPS, I was in Arkansas...
I live in TX, not good.
Get you some note pads and drink lots of water. Don't ask me how the two are connected, just try it. You should see some improvement in a few weeks. Good luck and God bless. hummingbyrd

7fergie · June 2003

bullfrog13 said:
Dear 7fergie
I can so identify with your concerns. I have been off chemo treatments for ALMOST a year (will be a year end of August) the memory has gotton somewhat better. I had cytoxin, and F5U and something else of which the name I CAN NOT REMEMBER!

It is a scary thing to not be able to remember things that you SHOULD. I got lost one day going to the Doctor -(which i did every week for 18 months)was in a parking lot- lost as could be only 3 blocks away- called my husband at work in tears because I could not find my way.

I FORGOT my OWN childs middle name- and it's the same as mine- but could not make the connection!

I would forget words of things. I got so MAD one day because I could not remember the word ''light bulb'' and screamed at my son to "get one of those things that makes the lights come on!" He just looked at me wierd and asked ''you mean a light bulb?".. I yelled at him "YES!" It was very tramatic for both of us.

Well I now remember words for things I had forgotten this time last year, and I rarely get lost anymore, and my daughters middle name is KATE.. see it gets better
Much luck and God Bless
Jerilyn

Thank you so much for your response and all your details--it makes me feel better KNOWING other people experience the same thing--I mean I knew I would and I knew other people do but seeing your message made it different-comforting. I was hoping I'd get quick replies as this is really bothering me. Thanks again.

7fergie · June 2003

hummingbyrd said:
Hey fergie I got on to write you a note, but can't remember what it was about.......LOL

I know it's not funny, but better to laugh than cry. I can't say my 'cheeeeemoooobrain' has gotten any better. I rather think I've just adapted. I have notepads EVERYWHERE! I even have notes for my notes. LOL I'll go from one end of the house to the other and by the time I get there I've forgotten what I was going after. Usually though, if I stand there, and look around, the 'light bulb' comes on.
You wouldn't believe how many haircuts I've missed. My hairdresser now calls me to remind me of my appointment. She called one time and I answered, 'hey girl, I remembered this time, I'll be there tomorrow at 4:00'. She said, 'Your appointment is today.' OOPS, I was in Arkansas...
I live in TX, not good.
Get you some note pads and drink lots of water. Don't ask me how the two are connected, just try it. You should see some improvement in a few weeks. Good luck and God bless. hummingbyrd

Thank you hummingbyrd for taking the time to read my message and respond so quickly. I'm finding it hard to be positive when a day doesn't go by without my forgetting something. I have to try so hard to focus, concentrate, keep my priorities for the day or week straight and remember important and unimportant things. Now I have yours and bullfrog's replies to go back to if and when it gets me down. To me it's like losing my hearing or vision--one of those things in life I fear. Thank you again.

Unknown · June 2003

Hi 7fergie
Wanted to add a few thoughts. Experienced some of the same things, still stuck in medical menopause, and it's gotten better. In my real life I am a speech language clinician and work with people (kids) but trained for all who have word finding difficulties. A few strategies for you: No. 1, give yourself a break and a big dose of humor - If you handle this with some humor, others around you will respond with humor (and help, I hope) 2. More specifically, using the describing is actually a great tool, it helps the neurons in your brain to start making connections, say OUT LOUD whatever info. your brain can grab - first sound, group or category it belongs to, function, location etc., it will help your brain activate better. 3. Yep, use those notepads! Also rehearse what you want to remember by repeating it OUT LOUD several times when your storing it in your brain! (Like those trips to do errands around the house.)
I think I would get more annoyed with my husband when he looked at me and waited and didn't offer the word I couldn't remember - I'd say "you know what I mean so just say it!!!!"
Good Luck!!!!!

cammie · June 2003

Just wanted to let you know that I am participating in a study at Dartmouth College on this very problem. The Neuro dept tested me prior to chemo, right after chemo, then they will test me 6 months after chemo and then again at 2 years after chemo. It certainly affects the brain, just finding out what is permanent and what is not and also what chemo's are worse. I will tell everyone my results when I get them. But my memory is starting to return - Last chemo was April. Good luck. Cammie

hummingbyrd · June 2003

unknown said:
Hi 7fergie
Wanted to add a few thoughts. Experienced some of the same things, still stuck in medical menopause, and it's gotten better. In my real life I am a speech language clinician and work with people (kids) but trained for all who have word finding difficulties. A few strategies for you: No. 1, give yourself a break and a big dose of humor - If you handle this with some humor, others around you will respond with humor (and help, I hope) 2. More specifically, using the describing is actually a great tool, it helps the neurons in your brain to start making connections, say OUT LOUD whatever info. your brain can grab - first sound, group or category it belongs to, function, location etc., it will help your brain activate better. 3. Yep, use those notepads! Also rehearse what you want to remember by repeating it OUT LOUD several times when your storing it in your brain! (Like those trips to do errands around the house.)
I think I would get more annoyed with my husband when he looked at me and waited and didn't offer the word I couldn't remember - I'd say "you know what I mean so just say it!!!!"
Good Luck!!!!!

You are sooooo right Getup. If I can't remember the name of something I'll say, 'you know that thing u plug in the wall, protects your computer, blocks power.........yeah.....surge protector, that sounds like a good name for it' LOL Just happened to me today, but in most cases, like today whoever I'm talking to gets bumfuzzled and can't think of the name right away either. Usually end up laughing about it. Also, I tell people (course I'm 41) my poor memory is not age its chemo. I took it I ought to at least get to blame it for 'CRS' you know 'can't remember...... now what's that word?' LOL God bless. hummingbyrd

reece · June 2003

I wonder if this is what I was experiencing, during chemo, and right after treatments stopped....
I had never heard of this before - but I swore that my breast cancer must have metastisized to my brain because of a couple of things. But the most noticeable was when I was reading to my 2 year old. I would mix the words, like a dislexic I guess. I would read "see spot run to Jane" for instance, like "see run spot to Jane" or something similar. This happened ALOT! I really was concerned. It is better now, does this sound like "chemo brain" ?

Just curious.
reece

rizzo15 · June 2003

hummingbyrd said:
You are sooooo right Getup. If I can't remember the name of something I'll say, 'you know that thing u plug in the wall, protects your computer, blocks power.........yeah.....surge protector, that sounds like a good name for it' LOL Just happened to me today, but in most cases, like today whoever I'm talking to gets bumfuzzled and can't think of the name right away either. Usually end up laughing about it. Also, I tell people (course I'm 41) my poor memory is not age its chemo. I took it I ought to at least get to blame it for 'CRS' you know 'can't remember...... now what's that word?' LOL God bless. hummingbyrd

You are so funny Hummingbyrd. You should see me at work sometimes. I can't remember somebody's name so when I'm talking to the President I lean way out of his office door so I can look down the hallway and read the name plate off somebody's door. Or one second I remember something and I end up talking around it for a couple minutes until the right word can spring back into my brain. Luckily I've never had the best memory in the world, or this would be extremely frustrating. I'm one of those people who is probably keeping the Post-It (3M) company business and I have calendars all over the place. I don't worry about it as I figure they know that I'm just forgetful, not dumb (or dumber!).

ryley · June 2003

Yes, there is such a thing as chemo brain. At least I hope so!

I sent my son on a camping trip and forgot to send his sleeping bag and pillow along. Poor kid had to sleep with 3 pairs of pants/shirts on to keep warm.

At work I've been kidding them that I'm a new employee (I've been in my field 25 years and 3 years at present employer) because I keep forgetting the procedures. "How do we do that again?"

Yes, a sense of humor definitely helps but I feel the sharpness returning day by day so I do believe it's temporary.

Hang in there!

DeeNY711 · June 2003

When I first accessed the chat room, there were two people there batting around plans for a new soap opera: CHEMONESIA. What had been a source of utter terror up to that point suddenly had a hilariously funny side to it when thought of within the context of such a term.... chemonesia. That made it okay for me to admit to my husband that sometimes my brain was getting mixed up, and it was due to chemotherapy. He chuckled and said he had noticed, and that it made it a little easier to deal with knowing the source of it as well as my own awareness of it. While working on papers for college courses, I find myself typing a totally scrambled word every seventh word or so. Good thing I enjoy "JUMBLES" puzzles so I can sort everything out. Hugs, Denise (today, I've typed jugs instead of hugs three times. Pathos.)

7fergie · June 2003

reece said:
I wonder if this is what I was experiencing, during chemo, and right after treatments stopped....
I had never heard of this before - but I swore that my breast cancer must have metastisized to my brain because of a couple of things. But the most noticeable was when I was reading to my 2 year old. I would mix the words, like a dislexic I guess. I would read "see spot run to Jane" for instance, like "see run spot to Jane" or something similar. This happened ALOT! I really was concerned. It is better now, does this sound like "chemo brain" ?

Just curious.
reece

Yes, it is definitely chemo brain. When I type(and I'm a good and fast typist) I make so many errors-I spend half of my time correcting my work. I misspell, transpose letters, put in letters that don't belong. Just now it took me a couple minutes to think of the word transpose. So, yes, you are having chemo brain just like the rest of us. Thank you everybody who responded to my message. I'm stressing less and adapting I guess but I still have to shake my head when I make the typing errors that I do so frequently. Thanks again--I love this site.

Jeanette

7fergie · June 2003

DeeNY711 said:
When I first accessed the chat room, there were two people there batting around plans for a new soap opera: CHEMONESIA. What had been a source of utter terror up to that point suddenly had a hilariously funny side to it when thought of within the context of such a term.... chemonesia. That made it okay for me to admit to my husband that sometimes my brain was getting mixed up, and it was due to chemotherapy. He chuckled and said he had noticed, and that it made it a little easier to deal with knowing the source of it as well as my own awareness of it. While working on papers for college courses, I find myself typing a totally scrambled word every seventh word or so. Good thing I enjoy "JUMBLES" puzzles so I can sort everything out. Hugs, Denise (today, I've typed jugs instead of hugs three times. Pathos.)

Your message really helped. I'm dealing with it better now--just kind of accept it and know it's going to happen. On a funnier side did they ever get CHEMONESIA up and running?!! I could play a starring role!! Thanks again

cognitive/memory loss

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