Chemo Brain

I'd say the one thing I've noticed after having chemo is that when I try to remember something, my brain just comes up blank. Before chemo it felt like my brain could think of something, some connection to something else that would lead me to a memory and then I'd remember. Now I try to remember something and I swear you could hear crickets chirping in my brain because it's not making the connections at all like it used to. It can be frustrating, but I try to tell myself not to get too upset about it and I'll try to think of it later

I temporarily went off AIs for some SEs and noticed that my brain fog lifted. Thinking I have chemo brain made worse by AIs.

I usually have very little memory of chemo days and the first couple days after. I'll say things to my husband that I don't remember after. We have about 20lb of potatoes at home right now because I kept buying a new bag of them on my way home because I was convinced I had forgotten to get them when I was grocery shopping and repeated that for 4 days. I keep receiving packages in the mail of things I've ordered that I forgot about so every day is like Christmas lol. We now have enough food storage containers to last until the apocalypse. My whole life is a series of half done tasks - laundry in the wash that doesn't make it to the dryer, filled a trash bag of junk in my car but keep forgetting to run it to the dumpster, return labels for my surprise online orders printed but keep forgetting to take the boxes to the post office. I'm doing ok so far at work - I've made a few critical errors and was left scrambling to cover myself but for the most part my coping strategies are getting me through the workday. I have to write down ever single thing I do or need to do. At home I'm a chemo brain mess but it's mostly something I can laugh about and get through with good humor.

My husband is kinda loving it because pre chemo me never forgot a single thing ever. I was the worst person to get in an argument with. I'm learning to give up control a little bit. Pre chemo me had to have everything done in a very exact and specific way and now I just don't care. I don't have the attention span for it.

Nanette

For what it’s worth, my chemo brain got much better with time. It can be very debilitating, the best thing for me was getting back to work and stay super occupied. But I remember days I thought I would never function properly again.

The fog did clear.

Chemo brain is real. The two areas I noticed it the most was trying to remember names/faces, and words that I should be able to remember, but I cannot. And then I obsess about it. Usually I remember the word I forgot 2 days later. I want my brain back!

I noticed two areas of cognitive dysfunction. Chemo was back in late 2006-early 2007 with one year of herceptin.

First was in math. I have always been able to do calculations of advanced math in my head. After chemo, I couldn't do simple math without paper and pencil and doing it was laborious and often was incorrect.

Second was spelling. I knew the word I wanted, but I couldn't begin to spell it. I would have no idea of even the first letter.

It was about one year after the end of the herceptin that my spelling ability slowly came back and is now back to normal.

The math has been more difficult. I can now do the simple elementary school level of math in my head. Anything more complex needs paper and pencil, a calculator and lots of thought. Thank goodness I no longer work where complex calculations for sterilization cycles and other calculations were part of my work.

Army of Women is connecting volunteers to a study of a cognitive tool. The study is in NYC. I can't participate, alas, because I'm over 65 but I hope they get their enrollment and proceed with the work. I'm curious to know more about this irksome side effect of chemo and if there is any way to lessen the damage. The researcher is: James Root, PhD, Memorial Sloan Kettering Cancer Center, New York, NY

The research team needs both women who have been diagnosed with stage 0 (DCIS) to stage III breast cancer and women who have not had cancer to participate so the researchers can compare test results between the two groups.

https://www.armyofwomen.org/studies/72128

I hate to tell you, but I still feel like I have chemo brain and I’m seven years out. I experience everything already described. I hate it!

I’m 11 years out. Chemotherapy induced cognitive impairment is very real. For me it’s mainly forgetting things, like from one moment to the next sometimes. Marcia1111; you’ll have this for life. Google what bc drugs do to the brain. It’s been proven they shrink a part of the brain. That’s why I don’t call it chemo brain - that implies it’s only a problem during chemo then full recovery. Not true. I was never told this could happen and f course I’ve never been offered any kind of help or therapy for it. That’s how medical oncologists operate - denials, lies and cover ups. They wouldn’t have any customers otherwise. 

Bitter? You bet. It’s the ultimate betrayal of trust to not disclose potential damage to our bodies. For a 2% benefit. Read about all the denials when the evidence abounds, google that too.

I’m sorry to this happened to your brain. You have a right to know what happened to you, just google it it’s all there. 

I took a class today in crochet. I used to crochet but found I couldn't pick it up again, with the chemo brain damage. In the one-to-one class the instructor was lovely and patient but I found that I couldn't "see" the difference between the stitches. We were working on a VERY simple hat pattern. Just single crochet and chain stitch. When you do the second round you insert the hook into the chain stitch space--except I cannot tell which is the chain stitch space and which is the single crochet space. The lady showed me, like, a hundred times. It's a little like my son's dyslexia. He couldn't "see" the words in a way that let him read. I can't "see" the stitches. At home I'm practicing the stitches with different size hooks and different weight yarns hoping the stitches will become more distinct. These failures in my brain are so confounding. Knitting and crocheting are supposed to be relaxing!

Ktpittsto I end up in tears a lot. Even today in the little class. When I felt the tears coming on I ended the session.

rubyredslippers I know that the part of my brain that was damaged is the area that handles processing. My processing is at the 6th %. I don't think they have ways of remediating the damage--not yet. Mncteach I did do games--word games, on-line cognitive games and such. They didn't help. I don't call it chemo brain either (except in this thread--in order to reach out). I call it chemo brain damage. I knew, though, going in that there was a risk of this because my oncologist didn't mince words. I did the chemo anyway because I read my pathology report and it was ugly.

Brilee76 I can concentrate, but only for a very short time. Even on this site it might take me a couple of days to write a response.

Marcia111 thanks for commenting.

Do any of you experience physical symptoms when you try to do tasks? It feels numb or stuffy behind my eyes; behind my ears; my lips get numb; numbness behind my brow. Do any of you feel those things?

I’m almost 2 years out from Chemo. My memory has definitely been impacted. Sometimes I actually find it necessary to tell people that I had chemo because my forgetfulness can be embarrassing.

I honestly feel like my mind has aged 20 years

I've left my car door open twice in less than 3 years since completing chemo compared to once in the 40+ years prior to cancer treatment. Luckily, the car was in the garage, but I missed work due to the related dead battery. (Why does the vehicle turn off my headlights automatically, but lets the battery completely drain without turning off the "courtesy" lights? That hardly seems courteous.)

Aterry, regarding people being dismissive of your senior moments, I recall wanting to strangle people when I would mention how debilitating my Fibromyalgia fatigue was and they would chirp that they would get tired, too. They didn't understand that their tiredness that responded to a relaxing weekend or didn't dramatically impact every aspect of their life to a point of losing one's career and life savings is NOT the same. And don't get me started on "but you don't look sick".

I've had the "stuffed head" sensation you mentioned, but it started long before my cancer diagnosis and didn't seem to worsen. Fibromyalgia and chemo both affect the nervous system so perhaps that's the commonality? I admit that I was blissfully ignorant about the "collateral damage" associated with cancer treatment until I experienced chemo brain, lymphedema and peripheral neuropathy myself.

Lyn

I will offer my experience - which is more positive than what so many people are sadly experiencing.

I finished chemo in July 2018, started rads in late Aug 2018 and was still doing rads when I started an accelerated bachelor of nursing program. It's a year round program and I'm currently finishing up term 4 (of 9). Yesterday I picked up my Dean's Honour Roll certificate. I'm a straight A student and thriving.

While so many people sadly experience very negative long term side effects from cancer treatments, I want newbies to cling to the hope that it's not inevitable for everyone. Best wishes everyone

This sums it up fairly well

ditto what aterry posted!!