• Chemo brain

    Asked by Sugarshine on Tuesday, November 6, 2012

    Chemo brain

    I had my first experience with chemo brain a couple of weeks ago. Had never heard of it before then. I completely spaced my blood draw for my chemo. I thought it was Thursday instead of Friday and it wasn't till the Infusion Center called and asked me about it did I realize what I had done. Then a couple of days ago I woke up at 3 AM and realized I had not taken my daily injection of Fragmin for the pulmonary embolisms for the last two days. I have started a list of my meds that I check daily now and let my family know what is going on so they double check with me on appointments. Is there anything else I can do that might be helpful? These are serious XXX ups and I definitely don't want to do anything to hinder my treatment!

    12 Answers from the Community

    12 answers
    • FreeBird's Avatar

      I'm not even the one who got chemotherapy, and I think I had secondary chemo brain. So, I started the habit of writing everything down. There's just so much to think about that it's easy to completely forget about things. I also rounded up everything related to dad's health care and organized it into one location. He did have the cloudy mind too, and could not remember things.

      I write everything that happens, and all future appointments onto a single calendar.

      The best thing for dad's medications has been a cheap pill box with the little compartments similar to this http://www.walgreens.com/store/c/ezy-dose-one-day-at-a-time-weekly-medication-organizer-tray/ID=prod6145638-product We just fill it up once a week, and it's easy to see if he missed any. If he started missing something repeatedly, I set up a funny alarm reminder on the computer. A lot of people use the alarm on their mobile phones. Anything that doesn't fit into the box, like your injections, you can keep them in the same place.

      almost 6 years ago
    • nancyjac's Avatar

      I agree with Freebird....alarms and calendars. Write everything down....and then remember where it is written. I've gotten pretty good with the things that are routine....daily or weekly. It's the things that are one time or less frequent than the same time/day every week that tend to throw me off.

      I have meds I need to take up to 4 times/day, some with food, some without food. Just coming up with a system to remember that was a nuisance. I had to post a chart on the fridge and then I have little plastic cups and the first thing I do every morning is to divide out the meds for the day into the cups. That way I know I've taken the right meds at the right time based on whether that particular cup if full or empty.

      I always wear a watch that displays day and date as well as time. My oncologist's office always calls the day before to remind me of any appointments.

      I always have a my calendar in the same place at my desk at home so my husband and daughter can always check it to make sure I haven't forgotten an appointment.

      I really hate waking up in the middle of the night remembering something I forgot the previous day. I keep a pen and pad on my night stand so I can write it down. If I don't I have trouble getting back to sleep. Since I've started do that, I've also found that I rarely wake up in the middle of the night for that reason.

      There are probably some other things I've done, but they have become so routine that I've forgotten what they are. Everybody needs to come up with whatever works for them. Some times just having forgotten something significant or the fear of forgetting something significant is enough to remember not to forget that particular thing again, but it can be a pretty stressful way of remembering something. So while it takes some initial thought and maybe even some trial and error to find systems that work for you, once you do, they become routine, no stress, and no forgetting.

      almost 6 years ago
    • Nancebeth's Avatar

      I used the note pad and calendar on my smart phone and it helped a lot. Not a perfect solution but pretty decent. I also made sure a friend had all my appt and stuff on their schedule as well so they could remind me. I still went to the grocery store and broke out in tears because I had no idea why I was there.

      almost 6 years ago
    • Sugarshine's Avatar

      Thank you for your input. Some I am trying all ready, others are great ideas that I will try for sure. It's just that you think you have this down to where you can somewhat handle it, and something else jumps up to bite you in the tushy! I am learning you can not get complacent about this insidious disease process. It's all right to say I put it in my higher powers hands, but I still have to be vigilant . Thank heavens for this site and all of you, or I would be definitely a lost soul!

      almost 6 years ago
    • SueRae1's Avatar

      Some great suggestions here. Do you have someone who can help remind you of your appointments and the times to take meds. I know I can write something down say 'oh yeah have an 11:00 appointment' and then forget about it. DH has been very helpful in keeping track of appointments, organizing my meds, etc. Most days I don't need it - but a back up system is priceless. Good luck.

      almost 6 years ago
    • Ivy's Avatar

      I experienced this, too, but I've also seen a study about chemo brain that was very interesting. It reviewed symptoms of chemo brain and found that large numbers of breast cancer patients who didn't have chemo treatment had symptoms of chemo brain, although those who actually underwent chemo had a higher number of occurrences. This suggests that perhaps the stress of having a major cancer is enough by itself to affect how the brain functions. This was only 1 study, so obviously more information is needed on the topic before anything definitive can be stated. So chemo brain may be more complex than just the effects of chemo alone.

      almost 6 years ago
    • Mollie's Avatar

      We did the exact same thing as freebird suggested. The pillbox and writing everything down on a little pad of paper and make sure you have the date and times of all meds, food eaten, bowel movements, etc. then the next morning you can see what date it was "yesterday" then you'll know what date is today and so on. It worked for us. Plus then I could double check.

      almost 6 years ago
    • cindywho's Avatar

      Hello Sugarshine It has been 3 years for me and I still have chemo brain. I got into the habit of writing everything down so I wouldn't forget. Sometimes when I am talking I will forget what I was going to say. Hopefully chemo brain will go away but then it might not. Good Luck.

      almost 6 years ago
    • cindywho's Avatar

      Hello Sugarshine It has been 3 years for me and I still have chemo brain. I got myself in the habit of writing everything down and it works. I also have trouble remembering what I was going to say when I am talking. Maybe it will go away and then maybe not. My family and friends know what is going on and some of the times we just laugh it off. But in the end I do remember what I was going to say. Remember your family is around to help you out.Good Luck. I was diagnosed in 2009 with rectal cancer had 2 surgeries and doing great. I went thru chemo and radiation before my 1st surgery wore a bag on my right side for 6 months then went thru more chemo before my 2 surgery and boy am I glad that I did listen to my doctor. I am here today and living my life to the fullest. I now have a new granddaughter who is 1 month old. I also have 2 grandsons Xander 6 Kollin 2. I take care of my grandkids and love every minute of it. God bless you Sugarshine and everyone else who is fighting this horrible disease.

      almost 6 years ago
    • HeidiJo's Avatar

      When I was in treatment, I put my husband in charge of my meds, i didn't take anything if he didn't hand it to me. He also kept track of my Drs. appointments. If you dont hae someone who can do that for you, alarms and writing everything down should help.
      Don't worry, the chemo brain will go away when you are finished with treatment

      almost 6 years ago
    • still_fighting's Avatar

      When I started chemo they told me to make a list of my meds and my appointments. I post mine on a large desk calendar that I have tacked up on my wall in my bedroom. That way I can see everything when I get up even without my glasses on. I keep a small note pad in my purse if someone needs for me to remember something so I can write it down. Unfortunately I still forget to take my list with me when I go to the grocery store lol. Or better yet, I forget where I put my list sometimes lol. My son takes medicine everyday so he always asks me if I've taken mine (bless his heart) but that doesn't always work because I get easily side-tracked and forget sometimes anyway, but for the most part it does so I don't miss too many. Hope that helps a bit! God bless!

      almost 6 years ago
    • DaveWaz's Avatar

      Your question helped inspire a blog article we wrote about chemo brain.

      Blame it On the Chemo Brain - Tips and Tricks for Coping

      For you and others who may be coping with chemo brain, perhaps you will find it helpful.


      almost 5 years ago

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