"CHEMO-BRAIN"

cwcad said:

chemo brain ?'s
I do not know if I have chemo brain or not. I had stage iV tongue cancer. I took chemo and radiation together for seven weeks Did not eat a thing for 18 months. Lost 160 pounds. Before going into treatment I was a vigorous, hard working individual who loved to work and did projects all the time. There was nothing not with in my reach.

Three years later I am 195 pounds, a shadow of my former self, completely exhausted, afraid of my own shadow and have very little respect for the way I am acting. I have lived a life where I usually did what I wanted when I wanted to do it!! Now I do nothing and do not seem to have enough time or energy to get it done each day. Taking a shower tires me out. I do not feel bad health wise. I feel lost, listless, and lethargic. I care but I don't care. The answer to all my problems is "Get over it" but that goes out of my mind and I start all over again.

Is that chemo brain? Or am I lazy? I am lucky to be able to retire. I was never rich but retirement is something that I thought I would have to learn. what I am finding is that I have found that I am a natural at being retired. Well if a man never does anything that he does not want to do. My question is..."Why do I want to do nothing???" I talk all the time about what I am going to do on Tuesday. Soon it is Wednesday morning and I wonder what I did that kept me from doing what I was going to do on Tuesday. The guilt that I build up in my brain never goes away. Yet guilt does not get me to do anything either. when I do try to do something I tire easily. My strength does not come back quickly either.

I may not have chemo brain but I sure have something. I am still trying to find normalcy. I had 54 years of what I consider normal. What I am living now is not bad by any means. I am living, I am loved, I am warm, dry, and fed. But to say that this is the norm of my first 54 years would be a lie. Consequently I tear myself up with self recrimination and guilt. Then I don't care and it starts all over. Doing nothing and not having enough time to get it done.

Is there any one out there that is feeling as I have described!!

yes I have exactly this and i am only 37. Vital and happy before the chemo and now a bath seems like it's too much. And I don't naturally "do nothing." Reading and writing were at the center of my life. now it's hard to write and reading is confusing without pleasure. I am trying homeopathic treatment and this drug http://abcnews.go.com/Health/Healthday/story?id=4507456

I don't know yet if it will work

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? ; )

yes trouble reading books when reading and writing was my life

Hodgkinninja said:

What

What

 did I just read..I forgot....

HAHAHAHAHA okay yeah I know what you mean...

In addition to what you wrote, I get lost in my own home, see overlays of past memories to real time (like when I go upstairs I see the lady that showed us the model home in another county), I lose time - hours.  I used to be first chair music, now I cannot read it, play it, or relearn it, and lost intereset in it.  I used to read, but take me long time to read your post and used software to write this post.  I have to put a not on doors leaving house to make sure water stove off and I have shirt and pants on.  I went from advanced degrees and high dollar earner multitasking high tech stuff and caregiving to parents to spending the entire day trying to stay on task to fix at least one meal for myself.  Then when I'm being followed by investigators I have to leave my iwatch aned iphone off which I use to keep things in check(e.g., timers, reminders, etc.) which sets me back years in what I manage to learn to adapt.  AM I alone when stating that if I knew what chemo would do I would not have done it?  Taxotere, carboplaatin, herceptin 6 rounds plus 18 additional herceptins.  Lost balance after first round, speach by third, reading by forth, hallucinations and loss time by fifth.  Took two years to teach self speak, but hit wall on retaining relearning.  I feel like movie, geez I keep forgetting it ... oh, ground hog day, except instead of building knowledge on each repeating day, I spend everyday relearning the same things.  Lost friends, the new ones know to reintroduce themselves especially if I see them in a different environment.  Would not be so bad, but I do remember being very independent and smart, now I'm stuck in trying to prevent finacial ruin to family.  How can I let folks investigating me that doing so is/has send me backwards.  How can I keep trying to improve without fear in attempting it will result in loss of benefits.  They have been follwoing me cents April, now several months, took calling police to get them from snapping pictures in my face when taking the trash out.  My issues are invesible to a camera, so what the heck.  I wish folks on this post would get benefits, because live is a living daily hell, like stuck in a glassw jar.  The bright side is I can speak better, still use wrong words, sometimes naughty words that sound close to right word.  I just wish people could just 'get it' but I know from my experience I would never have understood without being in this jar.  Maybe the law will put limits or notifications to police on investigations and total time and frequentcy to avoid valid disability people from being harassed and glass jar shrinking.  It is sooooo bad that we are considering closing out the benefits on our own to remove the harassement.  It errks me so much I ended up in hostpital, it really messes with a damaged brain.  Worse when you already have to work overtime to filter out real images from overlay images.  However, it is ammusing seeing a boat move across a church parking lot at easter no were near water.  Bless you all.

I’m glad I found you all. I see a neuroligist soon. I have been worrying about these symptoms since having my stem cell transplant. I’m still out of work, since last July.  I forgot how to shut the shower off, messed up my dr appointment. I get overwhelmed out in stores. Feel anxious and uncomfortable even in places I go often. Happy to know I’m not just crazy.

I had breast cancer 15 years ago. I chose to have dose dense chemotherapy so that I could get on with my life sooner after being treated.  Had I known what an effect this would have on my cognitive ability,  I would not have gone that route.  I had difficulty remembering words and putting sentances together almost immediately, My Oncologist told me it was temporary and to this day insists that chemo doesn't cross the blood brain barrier.  I have had six jobs in the last 5 years because I can't concentrate on any one task for very long.  Multitasking is impossible.  My short term memory is terrible.  I have not told any of my employers of this problem for fear of discrimination.  I am 60 years old and support myself.  My biggest fear is that I will no longer be able to do that and that my brain function is getting worse instead of better.

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

Been right at 2 years after a bone marrow transplant and its no better. I can remember10 years ago but not why i went into the kitchen..lol. My nurse said to carry a note pad in my pocket, i told I tried that but I keep forgetting it at home. So i have a lot of notes on my phone its not perfect but it helps. I would have to agree that the worst part is forgetting words or anmes in mid sentence. but i guess it could be worse...

It doesn't seem to even exist, but has ANYONE seen any kind of improvement after any of the recomended treatments?