Chemo Brain still raging 3 months post chemo

Chemo Brain still raging 3 months post chemo

Hello all,

Have any of you tried Acetyl L-Canitine for chemo brain? Three months post-chemo I am at my wits end (literally). A friend recommended this supplement. I looked it up and saw that some breast cancer patients were told about it by their oncologists, so maybe it's not quackery?

I've been trying to do cardio, but my energy is very limited. My work is technical (involves code writing, critical thinking and problem solving), but I am no longer able to do it. I also have lapses in memory. The stress from all of this is probably not helping, since I'm losing more and more sleep.

I am very chemically sensitive and take only vitamin D. I do not drink alcohol, smoke, or consume sugar. I eat a very healthy organic diet.

Any advice is appreciated.

26 Replies

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  • Hi neurodervish

    I have no knowledge of this product, but I would recommend a frank and open discussion with your GP, and see what his views are, he may wish to refer you to a specialist... perhaps a sleep study.

    ~chris

  • Hi there Neurodervish

    Having chemo takes a lot out of a person's body and mind. Strong treatment alone is a lot to take. Sometimes it takes awhile for a body to recover and function normally again.

    I hope you soon feel better.

    My bestwishes.

    sue

  • Wish I could help but I do not have information on that supplement. Just wanted to wish you the best and suggest mindfulness (meditation) to relax and calm the brain. I find it helps me focus, relax and remember things. Wishing you the best.

  • I think I still have chemo brain after three years post fcr!! It's either that or age related senility. But it's damned annoying. They say write everything like dates appts on your calendar...but what if you forget to do that!? I'm not sure that I want or need to take something that I've never heard of but I will do a little research on good old Google and maybe check with my gp next time I visit.

    Sheila from oz

  • I am so sorry to hear that. I don't think doctors take chemo brain very seriously. Mine just shrugs. Hang in there!

  • I am "reassured" in a sense that I am not the only one- I am 3 months out of FCR and am frustrated. I watch Jeopardy every night and have never been very good at it but there are certain categories I AM great at and I KNOW the answer but I just can't "think" of it. Then same with Wheel of Fortune except I used to be VERY good at it. Now I SUCK at it....

    Neither my oncologist nor my GP seem to be bothered about it. My neurologist does a memory test every 3 months and she just says my memory isn't "too bad" and it's not getting worse so she's not too concerned. I'm a teacher and supposed to go back in the fall so I am panicking at this point :(

  • I am so sorry you're going through this. I'd honestly feel better if the doctor would just acknowledge it and say It sucks. But to suggest I am crazy (when I'm already starting to believe it myself) feels like rubbing salt in the wound. And that contributes to the stress, which contributes to the lack of sleep, which contributes to even poorer mental acuity. (I'm trying to use big words here, so I don't sound so stupid. But it's taking forever even write this screed.) Ack!

  • Neurodervish,

    Are you taking a sleeping pill?

    If you're stressing and not sleeping then that could be a contributor.

    Your words, "And that contributes to the stress, which contributes to the lack of sleep, which contributes to even poorer mental acuity."

    Jeff

  • I'm more into meditation and bio-feedback. But since I've lost my attention span I did resort to Lunesta, which my pharmacist said was the least disruptive of REM. It did nothing but leave a terrible metallic taste in my mouth that took weeks to get rid of. I actually got some help from Benadryl.

  • I take .5 mg of Xanax at bedtime. Without it, I wake after 3 hours and every hour thereafter.

    Never needed a thing before Cll diagnosis.

    Helps also in particular Doctor visits.

    This is just me and I am not saying you need this.

    Maybe explore this with your doc.

    Jeff

  • LOL. I'm tempted, but am pretty drug-phobic.

  • I told the oncologist at the beginning of cycle 3 that the chemo brain was very bad, but he was quite impassive about it. I later read in the documented notes, "She is bothered by what she calls "chemotherapy brain", (as if I invented the term).

    I wish it were as simple as making lists or doing puzzles. I am forgetting to buckle my seatbelt and turn off the burners on the stove. It's a wonder I haven't burned down the house.

    I have done a lot of online searching and, at this point, am open to just about anything. Below are some links I've found. Any feedback would be wonderful. (Yes, I am looking for a magic bullet.)

    Exercise

    livescience.com/46047-exerc...

    webmd.com/cancer/features/e...

    Ways to cope

    caring.com/articles/chemo-b...

    Antioxidant Depletion / Glutathione and Chemo Brain

    wellnessresources.com/healt...

    Acetyl L-Canitine

    umm.edu/health/medical/altm...

    sciencedirect.com/science/a...

    brainpower.org/research/ace...

  • Not chemo brain related but I am a believer in ALC. I take ALC 600mg x 2 daily because I believe it helps resist upper respiratory infections. If I get really stopped up sinus I will add a small quantity from a capsule to my sinus rinse. It will feel hot so use a small portion of a capsule if you try it.

  • I also have some respiratory stuff going on, so that would be a boon. Some folks are saying it also helps with fatigue, which I also have.

    I can put up with anything but chemo brain. I need my brain to make a living.

  • I do sypathise with you nerodervish it must be incredible frustrating for you if you need a clear mind to do your exacting work. Instead it been clogged up with Chemo. I can make lighter of it as I'm retired from the workplace stresses. Nevertheless I identify with your plight. I have done similar things. Like leaving a pot of soup simmering on the stove then going out to the shops only to remember in the checkout what I'd done!! The woman in front of me was non to pleased when I asked her if if she would mind me going next as I'd left something on the stove. Still at least I did remember!!

    I mean mine could just be old worn out brain!

    Thanks for all the references... All

    Sheila

  • I had Chemo brain after my 6 rounds of BR. I took a supplement that cured it. Problem is I can't remember now what I took.

    Seriously,

    It sucks, it's real, and some of us get it. I'm 52 y/o so I guess it could still be dementia. 😳

    The cure is to find a treatment for CLL that doesn't do it. Or maybe these new Alzheimer's drugs.

    It seems for every action there's a reaction so I'll suffer through it. I just wish the chemo brain could do something good, like make us forget about cancers.

    Jeff

  • I am out of chemo (B&R) about two years and still suffer from chemo brain. I take 1 mg of Xanax, and 300 mg of Gabapentin (for sleep and migraine), along with 200 mg Topiramate for migraine at night. I am thinking the combination of the chemo, my migraines; and the drugs may be a contributing factor. However, without a good nights sleep, everything is exaggerated. Gonna try to wean myself off the Xanax slowly and try Melatonin.

    Next month I have an appointment with my neurologist to discuss options. Starting to write down my list of questions now so that I don't forget anything. I hope he lets me record the appointment.

    My CLL specialist (Dr. Jennifer Brown) let me record our appointment (there is an app for it on the iPad,) and it was a blessing. I have replayed it several times and it brings tears to my eyes as to how much I did not remember from the encounter. All doctors should let you record the appointment, IMHO, just for this reason! There is no way that a patient, especially with cancer, can remember what is said during an appointment.

  • Ros,

    I tried getting off the Xanax. Sleepless nights. Tried the Melatonin. Didn't work for me.

    A good night sleep is priceless. Take your Xanax in my opinion.

    I hope you got great news in Boston

    Jeff

  • What strength Melatonin?

  • 3mg

  • Have you tried increasing the strength of the melatonin? I'm thinking of slowly stopping the Xanax and taking the melatonin to see if that helps with my memory.

  • Jeff, my appointment on Tuesday went well, thank you for asking. I went in on the Saturday before for blood work and a CT scan, so that it would be processed in preparation for the doctor's evaluation. I have learned that some results take days, and I like to have a copy to review with the doc.

    I asked if she was OK with my recording the conversation, and she was. Even though my daughter was with me taking notes, it doesn't compare with the verbatim recording.

    My disease, that's the word that the doctor used, is not so much in my blood, but in my lymph nodes, as such, I'm more in the category of SLL. The nodes have grown slightly since last year, but not enough to be a concern; they are not round, but long and skinny, which she said is better. No CT scan necessary next year, maybe not for five years (yea,) however, a follow up visit every year, and also with a local doctor in six-months. I have my personal demons with needles, my veins are dead and tough because I did not have a port in!

    All-in-all, I would call it a very happy dance. I don't understand why my brain doesn't hear all the music. Silly me!

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  • So hard to separate chemo brain from aging, and other impacts, such as Alzheimer, lewy body disease and so on.

    I also do critical thinking work and am resigned to being good for only, 6 or so hours, in that mode, after that good only for rote work, reading and such. After that i have found my fountain pen in a coffee cup, hilarious but disturbing. I am 60, have friends with no disease, who are also"slipping", one refuses to take any important papers away from home, for fear of leaving them somewhere.

    Sleep is unbelievably important, and not easy to get needed 8-9 hours. Also nap, even in chair if i feel my mind going foggy, even 20 mins makes a huge difference.

    Used to multitask, no more. when doing critical work, i no longer allow music, conversation or any other distractions.

    I start critical thinking as soon as i can after awakening and frantically do everything i can to cram in work while brain is fresh. Once the fog comes down, i stop making important decisions.

    Sometimes i see small errors, the following day and realize that i pushed the the limit a little too much, so self awareness is key.

    At this point i believe it its important to slow down, accept that one will not be able to function at a high level forever, be honest and monitor quality of work, there is no excuse for sloppy work.

    Had an uncle ,high functioning accountant who took his wife over his papers as he felt his brain going, she only later understood that he was putting things in order before Alzheimer type disease set in, he was about 70.

    Having said that Denton Cooley( cardiac surgeon) functioned well into 70's, took an inviolate nap at 1 pm, every day.

    Point is there are many reasons for brain fog, or chemo brain. Completely agree with your search for solutions(diet, exercise, supplements. Do not stop searching!! And please let us know what you find.

    Do consider changes in routine, lists and so on. good files, in computer, smartphone and paper. Use of mind mapping and other wonderful tools from the modern tech era. Personal assistant if you can afford one. Exciting possibility of virtual personal assistant soon from google, others.

    There is evidence that the brain accumulates fluid, products, which impede thinking, during the day, that sleep washes out. Also the brain uses a lot of oxygen.

    There is very little understanding, sympathy from physicians, employers, it is up to us and this type of community to maintain best possible functioning.

    Thanks for bringing this up, thanks for having me regurgitate, my disjointed thoughts on this.

  • Lenny, I sincerely appreciate all your thoughts and concur. And I agree that age is a factor. Menopause is as well, for those of us with xx chromosomes. :)

    But age is a gradual experience and this was practically overnight. It was like waking up with dyslexia and aphasia, along with a case of clumsiness. Being told by nurses that lists and crossword puzzles will help feels somewhat laughable. I know it's the cost of doing business and that if one's life is saved, it's worth it. I don't mean to sound ungrateful.

    The costs of chemo brain are financially and environmentally expensive. I've ruined pans from leaving them on lit burners. I make too many trips because I fail to read my own lists. I've miss payments, despite reminder apps and incur penalties. I accidentally deleted client databases and did FTP uploads to the wrong folders. When writing code, a colon instead of a semicolon is a fatal mistake and not a little typo. And so, my self-confidence and positivity die a daily death of a thousand expensive cuts.

    I am doing everything within power to improve my mental acuity. I believe Acetal-L-Carnitine with Alpha lipoic acid may be helping (or it's just a coincidence). I like to think exercise helps. It sure can't hurt, so I do it despite the fatigue.

    Sleep deprivation definitely makes it worse. One would think insomnia would crop up at diagnosis and not after chemo. I used to be a good meditater, but don't seem to have the bandwidth for it these days (oh, my aching pre-frontal cortex!).

    So many on this forum go through much worse, so I feel like a crybaby for complaining. But from what I've learned in the short time I've been following this forum, it is truly a wealth of resources and I am grateful to you all. I mean it.

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