I've made several bloopers in the last few days that are not like me at all, plus I'm finding myself really having to search for words at times, almost always nouns. I'm used to being a good problem solver and thinking clearly. The searching for words more was the first thing I noticed. I've been getting UV treatments for eczema twice a week and the dose has been gradually increased. Thursday I thought the dose I'd been given was too low and asked the nurse about it. She looked at my records and verified it was right. I was my self advocating firm self, not loud and not insulting but convinced....... Half way home, I realized that I had been wrong and had reversed the numbers from 1.2 to 2.1. So I am embarrassed an am going to apologize when I am back there this coming week. Then on Friday, I kept having trouble with my hearing aides staying in place. I didn't realize until I took them out to go to bed that I'd put them in the wrong ears! There is a right ear hearing aid and a left ear hearing aid and of course they don't fit when they are switched. Boy, did that make me feel like a fool because that should have been the first thing I checked when I realized they weren't in right! DUH! I have been on meds for mbc consistently for 15 1/2 years! I've been extremely fortunate to have a nice unaggressive easily managed bunch of E + cancer cells that respond well to treatment and I've never had symptoms from the bone (only) mets, no pain and no need to limit activity. I've been pretty tired almost all the time for the last couple of years and of course I'd much rather blame cancer and cancer treatment than age! I'm 73 now. not an old age in my family, with alot of ancestors who've lived into their 90s and 100s for generations. When I was younger, I saved money to support myself that long and I have excellent medical insurance with low deductables so we don't worry about that but I do want to maintain a good quality of life and if my brain does't work well, that would be a huge blow.
So....do others have experience with loss of cognitive skills, complex thinking, multi-tasking? Has it been gradual or sudden? Have you found ways of coping? Sigh. I really hate to have to ask about this....much rather talk about hair loss or scanxiety!
Thanks in advance......
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PJBinMI
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hi, strangely enough I have had a bit of that recently, struggling to find the right word. I couldn't remember parts of the Lords Prayer and I couldn't understand why. Also just the odd word here and there, not enough to really concern me but enough for me to think it's strange. They say playing memory games is good for things like this - the one where you turn over cards and match up in pairs is a good one. you can do those electronically now on the computer. Also crossword puzzles and that kind of thing. It's exercises for the brain and keeps it active. Best wishes.
Hi PJB,
I've also experienced pretty pronounced cognitive decline (I'm 57); like you, I can't "access my vocabulary", can't analyze sets of numbers (this is partially how I made my living), and am so forgetful that I now have a sign on the oven reminding me to set the timer because I've burned so many things! I often "joke" that I'm like the main character in "Flowers for Algernon", whose name escapes me (not sure if I'm referring to Charley or Algernon...or both?), in the final chapters!
Unlike with you, this happened to me within the first couple years of beginning treatment. I don't know if it was the meds or hormonal (oophorectomy), but I'll be honest and say that this made me sadder than any other side-effect. I've tried to build strengths in non-intellectual pursuits, which has been gratifying and has brought me in new directions. But I still miss my brain, wherever she's gone to. Perhaps we'll meet again...
I've also tried to strengthen the failing parts of my brain, e.g. I just finished up two online classes (took 3 months each) re: algebra and pre-calculus. I leaned heavily on online tutors, but pushed myself pretty hard. I'd sailed through calculus in college but am thinking of not doing that class now because it was so hard to do the others. I also do the crossword puzzle regularly but I get impatient and just click on the answers for clues. But this is about exercise, not accomplishment.
I'll state the obvious: mention it to your docs and pharmacist, it could be drug interactions? Although I cried on the phone to my docs (again, the only side effect that brought me to tears) when it became acute and I was kind of brushed off. Hopefully you'll get clearer answers; if you do, please share.
online algebra and pre-calc? You are a warrior! I wouldn't have tried that even when all pistons were firing. After 2 years of treatment I definitely have a case of the missing nouns, especially proper nouns. Yikes...I just had to google "noun types" to remember that the word for those nouns for real places are called "proper"....it's worse than I thought!!
Yeah, I sailed thru calculus in college, too--actually took second term calculus when I needed an easy 5 credit A! I have fallen so far from those days! I do plan to tell my onc about it when I see her the week after next. I'm having a CT this coming week, and blood work. I stopped worry about those ages ago, but I do pay attention to how I am feeling and tell my onc about changes. I have some other health issues, some from way before cancer and some diagnosed after cancer. Oh, I just remembered that I do sudoku but my husband does the cross work puzzles in the newspapers. I figure square roots in my head when I come out of anesthesia after procedures to make sure my brain survived, lol. I am going to ask my onc if the cancer center has a psychologist who tests people for cognitive decline. We sure lose alot to cancer!
I'd suggest you think twice before trying to do math again...it was shocking to me to be able to sort of measure how far I'd fallen! I'll admit that my initial plan was to just take calc -- a friend had "gifted" me a course -- but on the first day I realized that I needed to "brush up" on the earlier stuff! I had this sweet young tutor - college student - and I'm pretty sure he was skeptical when I would say "I swear, I used to know this!" :).
I just remembered that my sister took one of those online "IQ" tests just prior to starting chemo way back when and was going to re-take it afterwards to sort of measure the effect of chemo in isolation....Not sure if she ever did that, I'll have to ask.
I did an online IQ several years ago, 134. I am totally afraid to take now!!! Oh well!! It doesn’t matter to me anymore but my brain is ok right now at approaching 70. I do take a black cumin seed oils pill in am. I looking into other assists now
Yes strangely enough. I feel I am losing acuity little by little. I am used to being sharp, on point and quick. I have noticed it declining. I am aware of it, so I try now to take it easy and focus. I have thought of why and there are so many factors. The mbc itself, all the meds, the stress and anxiety, the whole package. I will be 66 which is not young but not old either. I find I have to focus- when I don’t I screw up. Just too preoccupied in the brain otherwise.
I am sure you must’ve heard the term chemo brain before? I used to be quite intelligent (was never great at math), these days I feel like a complete idiot quite often. I do still have pretty wonderful long term memory but my short term and mid term memory banks are fried. I do know chemo works by killing off new cells, so I am assuming it kills of new cells in your brain also. Old cells aren’t being replaced as they die off. I just had HIPEC in May and cognitive change was actually listed as a fairly common side effect for the drug they heated and pumped through my belly. I didn’t notice much of a change till about 2 months out and then bang it hit me like a ton of bricks. Example, I went out to run errands one day in my vehicle. I was done with errands, got into my car, started it, pit it in gear and pulled out of my parking space - I couldn’t figure out where I was supposed to be on the road. Now I have never traveled overseas or anywhere where driving is done from the opposite side of the road as it is here (USA). I sat there for a second luckily I was in a not busy parking lot. Panicked I watched the next car I saw that passed by to see where it was. When it did it was crazy but I actually thought I wonder if they are on the correct side because they had just pulled out of the lot. I backed back into my spot and had to wait till a group of cars went by together, I figured 3 drivers can’t all be wrong at the same time. I pulled out and went straight home panicked that I had gone through this lapse. About 3 days later, I actually drove by the street my house is on and had to sit for several minutes before I could figure out how to get home. I have had general loss that bugs me but these extreme moments were terrifying. That was about a month ago and I seem to be back to just a general loss especially short term. It is awful the feeling of losing ones capable mind.
I've had strange moments when driving, too! I got lost once on a route that I've driven at least two or three times a year since I moved here in 2000. I drove into a gas station to buy some gas and drove east instead of north when I left it and didn't realize my mistake for at least 15 or 20 miles! By then, I would have been late for the event I was planning on attending, so I went home. I also had a moment a few years ago when I couldn't remember how to brake the car--fortunately, I didn't have to stop at that moment, lol! But it scared me. Awhile later, my dear 15 year old Camry needed some expensive repairs and we decided it was time to replace it. We don't usually buy new cars but that was in 2017 and Toyota had just added a bunch of safety equipment to the 2017 line of cars so we got a new Rav4 and I love that it has a back up camera, lane change warning and an automatic slow down feature that goes to work if there is a slower car ahead of me. All that helps me feel safer. But I have told my retired cop husband that I count on him to help me know when it is time to stop driving! IF he hits that milestone first---yikes, I don't think he'll listen to me so my plan B is to talk to his good buddy, the Sheriff! Aging plus living with advanced cancer sure is challenging!
Hi I know exactly what you mean. I have been losing vocabulary for a few years, even before MBC. It has certainly got worse since starting the meds. Like you nouns have gone out of the window. I put it down to age as I am nearly 79 but I am sure the meds have made it get worse more quickly. Fay
I'm 64 and on Ibrance 100 mg. I noticed that I was searching for words and names before I started treatment last Fall. I think it's a combination of aging and life! At least I do eventually find the right name or word! And yet I can solve a difficult problem easily. Go figure! Sounds like you are very blessed! Take a deep breath, take your vitamins and relax. Hugs!
I stopped ibrance. It was changing my brain and giving me chest pains also. I won't say I will never take it, but I think I will wait and see what the letrozole alone does before I add anything. I took care of my mother with dementia and I watched her mental decline and was having too many similarities; and whereas I had experienced the struggle to find words before because of getting older, this has been SO MUCH MORE PRONOUNCED since I started ibrance, and not only that but running over at the mouth like an idiot, and just after 4 days off of it I feel like me again, not a space cadet; I will know soon because I'm not taking it anymore. I've been praying as to whether to stay on it or get off of it and my last cbc my MPV and MCH were up over 10% and they both started rising only when I started ibrance. I looked it up and it can indicate liver injury, so that was the cherry on top. No, I don't understand labs totally but I can understand what I read. I will see my onc soon.
Godbeforme, where are your mets? I am only taking letrozole at the moment until my next scan. Are you having any side effects? I was doing falsodex but it stopped working, I thought I was doing well on the shots. I have to do radiation for 6 weeks but like you I hope the letrozole does it's job therefore I dnt have to do anything but that. Thank you and God bless you
bone mets only as far as I can tell with some swollen lymph nodes. he wanted me to do radiation on my femur and I didn't want to. I am just not wanting to be messed with right now ... I am not a good patient. God bless and heal us all in Jesus name, amen!
I’m a huge believer in milk thistle fir liver support. The MCH and MPV are definitely because of Ibrance. Your blood cells get larger because they are trying to survive.. I have been off Ibrance for close to a year now and letrozole alone. So far so good. I take life day by day and now labs every couple of months
Thank you! I am seeing my onc on the 18th and I was wondering about the frequency of labs now that I'm on letrozole alone; I'm thinking the bone scan will still be every 3 mos. but I haven't a clue ... I really wanted to stay on ibrance, it was the chest pains and high blood pressure even when taking my bp med that finally put the brakes on it for me, as I am not one to want more meds to treat the side effects of OTHER meds and sure enough, the chest pains and blood pressure have returned to normal. What took me by surprise was my great sadness in giving up the ibrance but that only lasted a day and actually may have been lack of sleep ... I appreciate your response and info, and God bless you and heal us all in Jesus name, amen!
oh forgot to add, I had read about milk thistle years ago and one of the inmates at the prison hospital told me how she was in the hospital every few months because of her liver and hepatitis, and I told her about the article I had read. long story short, she was able to get it at the prison commissary and next time I saw her she practically came running up to me to tell me how much better she felt since the milk thistle and to thank me! thank you as I had forgotten ALL ABOUT MILK THISTLE! this may be good for any suffering with liver problems! laters! xo
Hi! I’m only 48 but I typically get this when I am overloaded with work and recently moving and have multiple people approaching me to do volunteer ministry...my head is about to explode! So if I look lost and can’t think of what to say or don’t know where the charger for the electric screwdriver went u just have to forgive me!
But yea! Chemo brain is worse for me when legitimately I have to much going on...But 5 more weeks until Disney vacation...😀💕
Not sure I f it’s age, chemo, multitasking, stress or a combo. But yes, I have notice a mild forgetfulness, word searching and getting overwhelmed more easily. It seems like a very subtle, gradual change, although I was always misplacing keys and glasses. Probably a byproduct of living a genteel messy and harried existence. My parents were pretty sharp when they died at 95 and 86, esp my dad. Mom made it to 95 and was slipping a bit but was still competent. I compensate w lists. I’ve always been a fan of lists, but now have a calendar I carry in my bag and I put things I want to remember to do on my phone calendar so I see the notification. I still do better than most people I know so I’m not too worried. Right now I think the stress of trying to plan retirement and all it entails and working full time is not helping. I am making a more concerted effort to be organized.
Yes, I started also with cognitive issues suddenly and got worried!
I started a whole food plant based, no oil, no salt, no sugar eating style a few months ago and felt great on it. With that diet, I also took an Omega-3 supplement. I didn't refill that supplement when I was out last month as I thought my daily tablespoon of flaxseed would be enough.
But for a few weeks now I felt increasing declining cognitive issues. Kind of fuzzy mind and very forgetful. Yesterday I reordered an Omega-3 supplement and I'll see if it will make a difference. If you research the benefits of Omega-3, it should help. But I'll post here if I feel any improvement on it.
• in reply to
Thanks, Spiffy! I did not realize that there are vegan Omega-3 supplements, but your post inspired me to search! I just ordered some....
I have been having trouble finding words as well. If the person I am talking to gives me a few seconds I can usually pop out with it or I describe what the word means and the person I am talking to most often can give me the word. Funny thing is that it happens with really easy words like look, pig, car...etc, but I can pop out with something like constitution proclamation when others can't remember that. lol I am sure it is caused by the Ibrance or Letrozole as I was sharp as a tack before that and I am only 60.
I’ve been on the meds for one year now and I’ve noticed a cognitive decline. Searching for words spending time getting my sentences correctly together. Maybe it has to do with age. I am 76. But I like to call it chemo brain. Takes the onus off of aging.
I have been foggy since chemo, but tend not to be as anxious as I used to be as much of my memory is shot! At first I was very anxious as I was always sharp and organised and could zip through the Times crossword, now that’s impossible. I hope I improve, perhaps omega 3 may help. Seems to be par for the course! On the bright side the brain can regenerate, so fingers crossed dear ladies X
Thank you for all the replies--I'm sorry that others are struggling with this but also glad that it isn't just me! I do claim chemo brain sometimes, though I've never been on chemo, lol, but using the "cancer card" when we can can be helpful!
I used the cancer card today, then was ashamed for doing it. The little old man was at the door doing the census, I gave him the required info and then asked if that's it and he said no, then I said do you need our names and he said no. And then out of the blue I said, "I'm just home putting up groceries and I have cancer" and he said thank you goodbye LOL ... I hate to laugh but it's comical to me now that I said that ... like that ....
I believe I still have chemo brain from my initial dx. Has improved but not as sharp and quick as I used to be in finding words.
I also find I can't concentrate and focus as before mbc. It may be because some days I'm preoccupied with this horrible dx!
My mind has turned to mush and I can’t remember a thing. I saw the oncology psychiatrist at my clinic and he said it is perfectly normal and they call it “chemo brain” He actually prescribed something for me to try and see if it helps me and possibly gives me the desire to actually do something.
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I kind of ... sort of... got in my own way on this MBC journey! 🚘
