Chemo brain

aterry · November 2017

The chemo side effect that has persisted and caused the most disruption to my life is chemo brain. I am 8 months post final chemo and 4 months post radiation. (lumpectomy was in between) I still experience a cottony brain. I did neurological testing 2 months ago. The results showed big deficits in attention and working memory. In both categories I operate at the 5th percentile which means I can just barely absorb and manipulate new information. I rarely drive now and even shopping for groceries or clothes is hard. Other categories showed only minor loss of function and are fine. The neurologist says that I will rebound from the attention/working memory deficits but I'm not so sure. The goal posts keep moving. At the end of chemo I was told chemo brain would improve in 3 to 6 months. At the time of neuro testing I was told 6 to 12 months. When the neurologist reviewed the test results with me she said 12 to 18 months.

The neurologist recommended 9 games that I could play on Lumosity as a way to help rebound. I've been doing them and we'll see. Mostly they just bring on the cottony/numb brain feeling. Neither the neuro or the oncologist can explain what that cottony/numb sensation is caused by. (I also do cross word puzzles, study French in duo lingo, read a lot and go to book club, exercise, go to exhibits, etc)

The neurologist has applied for a grant to study chemo brain and I hope she gets it. She has had triple negative breast cancer herself and had AC-T chemo. She experienced chemo brain so she knows it exists and is bothersome.

One reassuring point that the neurologist made was that my deficits do not suggest dementia or advanced senioritis (I'm 68) She said that in dementia deficits are more pronounced in retrieval and retention than in attention. I did fine in both retrieval and retention. So at least there's that.

Does anyone else have actions they are taking to recover from chemo brain?

Denise-G · November 2017

Lots of newer studies out there about chemo brain. It is real, that is for sure.

The thing that helped me the most was joining Lumosity.com (free trial) for brain games. The day I got lost

driving around a neighborhood I knew all my life, was the day I started doing the brain exercises. It REALLY helped me as I had

noticeable changes within 2 weeks. I kept at it for about 6 months, and no more chemo brain! ow I have age brain!

aterry · November 2017

Thank you for the encouraging report, Denise-G. I signed up for the paid part of Lumosity because my neurologist recommended specific games. How much time, each day, did you spend on the games? I find I can't do more than two rounds at a time--only 10 minutes or so. Maybe that will improve as I go along. The neurologist also mentioned a site called Dakim but said that it is not as configurable--that is you have to do their sequence and can't pick and choose which games to try.

Denise-G · November 2017

atery - oh good for you! I did not spend a lot of time on the games. Ten to 15 minutes is all.

My brain would get tired. I did try to push myself sometimes. I, too, signed up for the paid part of it as

it helped so much to keep doing it. Interesting what your neurologist had to say about them!!

My sister is two years out from chemo and still having chemo brain, but it has improved over the

last few months.

Wishing you all the best! It will get better!!

oropallo · November 2017

I fell down the steps in July and suffered a bad concussion. An MRI showed demylenation and scattered foci in the white matter bilaterally consistent of Lupus? Lymes? untreated hypertension? Flow void in base of brain also.... They said it was not MS, however, I am nervous. I looked up Demylenation Disease and it definitely states it can be caused by Chemotherapy! I have been screaming "chemo-brain" since day one. Noone took me seriously. I was told in a year it will be gone. NOT TRUE! My balance is seriously effected.....incontinence is unbearable for both urinary and fecal incontinence......memory a big problem and well as struggling to find words....sometimes.....Anyone else having the same problem. If so, what can be done?

aterry · November 2017

Oropallo, I'm sorry to hear about your continuing problems. They did the MRI following the fall and concussion? So did they say whether the fall may have caused the demylenation or did it seem the demylenation, etc., may have caused the balance problems and hence the fall? I did not have an MRI so I don't know about any physical damage or changes to my brain. I feel sensations inside my skull but the neurologist said that there are no nerves in the cortex which would cause sensations--only the activity of the cranial nerves would result in sensations and cranial nerves don't handle cognition.

Have you asked your doctors for PT to help with balance problems? I had problems with proprioception but that has improved.

Oropallo, Denise-G, The games my neurologist recommended are: Speed Match Overdrive, Tidal Treasures, Playing Koi, Lost in Migration, Disillusion, Ebb and Flow, Color Match, Space Junk, Memory Lane. I told her that I'd heard that Lumosity had been debunked. She answered that it has been debunked in terms of claims to increase over-all intelligence. She explained that certain, individual, games improve specific deficits such as the ones I have in attention and working memory.

Oropallo, I don't know what the connection might be between chemo and urinary & fecal incontinence. I didn't experience that. Have you had any work up with a urologist regarding that? I know it's frustrating to just keep going to doctors.

Chemo brain

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