man I am really struggling with this brain fog. It is making things really difficult to deal with. Personality changes, cognitive difficulty, memory loss, having trouble verbalizing my thoughts in a clear manner. I have this feeling of detachment, like my mind is outside of my body somehow. It's all very weird. Is this common? For those of us who have gone through treatment and been cured etc, did these symptoms ever go away for you? How long did they linger? Am I going to be this way forever?

Chemobrain is a real thing. I have suffered a mild form of it. Im almost 4 years post chemo and still have some memory issues. My problems arent nearly as severe as what you are describing. I have some memory loss, forgetfulness and am a little slow with learning new things. I sure hope its not a permanent condition! Hope yours improves with time.

I'm not sure of my issues here in terms of severity. Not really sure what to compare it to. I mean I can still function of course. But it is definitely a noticeable difference. I feel like a different person altogether sometimes. I should probably bring this up to my MO.

Hank, you are not alone my friend. I've had issues here as well and have done research on ways to help, some tips and tricks that have helped get me through the haze.

I'm at work and on my phone so I'll do a more comprehensive post when I get to a "real" computer and have everything at my fingertips...and a real keyboard to type it up with....stay tuned!

Hank, it is good to discuss any changes of issues that happen with your doctor. They will be able to help you in knowing when something is too far out of the ordinary.

Great job on the signature!!!!

Thanks Eric, I will be looking forward to reading what you have to say. I am very concerned about this because I have always been exceptionally intelligent with a talent for strong communication (not to be vain or anything). But I am a brainy type guy, strong multi-tasking go getter. I'm in politics and media and am hoping that this doesn't deteriorate my brain permanently in any way. I would be horrified to be honest. It's already put my voice at risk, which has brought my media career to a screeching halt but to have it deteriorate my capacity to think and reason and communicate permanently..... I dread the the very idea. I will of course soldier forward as best I can, but .... dear God I hope this isn't permanent. I will have to completely rewrite my life and my whole identity. I'm going to definitely talk to my team about it and cast myself at the feet of God for mercy and healing.

Thanks Christine. Your posts here have been a real blessing to me and I want to say thank you. There is something solid and direct but kind about them that helps keep me a little steadier. God bless you friend. There are truly hosts of angels on this forum.

Hank,

You are talking to a guy that used his brains, looks and communication skills everyday in my career before cancer...and you're also talking to a guy that lossed it all due to the effects that cancer and treatment had on both my looks, ability to communicate and in some ways my thinking and reasoning abilities. I can relate.

As Christine has pointed out, you need to discuss things with your Dr, my opinion your MO is the best option as generally the General Practitioning DR's are not equipped to give educated advice on the matter to cancer patients. What I've found is that I've had to look for answers on my own and run them by my medical team and then see what works for me as everyone is different. Being unique biological entities does have its hang ups like that.

Now the way I looked at it when I knew I had an issue with memory and cognitive abilities was I needed to find the "cause" of the issues as it's always the easy answer for Dr's to give you scripts then to get to the root of the cause. In my opinion, treat the cause not the symptoms as when you start adding different drugs to the mix you are going to complicate the matter by the side effects caused by those drugs and they might not even be necessary.

We can just chalk up the cause as "chemobrain" which will give us these symptoms (taken from the Mayo Clinic's Site):

Being unusually disorganized
Confusion
Difficulty concentrating
Difficulty finding the right word
Difficulty learning new skills
Difficulty multitasking
Fatigue
Feeling of mental fogginess
Short attention span
Short-term memory problems
Taking longer than usual to complete routine tasks
Trouble with verbal memory, such as remembering a conversation Trouble with visual memory, such as recalling an image or list of words

Now what's not known about "Chemobrain" is if it's actually caused by the reaction to Chemo itself or from the other factors that go along with the disease...the emotional and physiological responses to treatment and or drugs etc... So what I did was narrow down my symptoms and see what could possibly cause each and then look for the solutions based on that information.

What I found was a mixed bag. I had low testosterone due to both radiation damage and long term opiate use, which will cause similar symptoms, as well as PTSD (post tramatic stress disorder) which will do the same. So it doesn't have to be just "chemobrain" it can be of slew of other issues especially if you are using some prescribed medications, opiates and benzodiazepines (both of which are commonly scripted to us cancer patients, I was on both) will also have an effect on cognitive function.

My approach was to cut out the chemical culprits, opiates and benzos for me (a long term effect of benzos is actually cognitive impairment), and then treat the low testosterone and PTSD. I also started reading on how to help my cognitive abilities, there is always a way to sharpen a knife no matter how dull it is to start with you know

What I've done:

Exercise and nutrition: they do a body good...and the mind. Strong body strong mind. Google exercise and cognitive abilities and do some homework. Nutrition and exercise play a BIG role in how the mind works so it's always a good idea to sharpen up there, at least in my "humble" opinion. (I don't think I can ever be considered humble!!!)

Supplements: There are natural herbs and supplements used by different cultures throughout history that recent studies have shown to be effective in boosting memory and brain functions. I'm going to give you a list and do some homework. Ask your MO about the ones that you think may make sense and then start experimenting.

Acetyl L-Carnitine
Alpha GPC
ATP (Adenosine Triphosphate)
Carnosine
DMAE
L-Glutamine
Phospatidyl Serine
Vinpocetine
the B's! (B3, B6, B12)
Fish Oil(it's good for more then just your heart)
Kola Nut (this stuff is awesome if you are a caffiene junky...say good bye to espresso if you buy the extract)
Ginseng (I use korean)

There are "scores" of magic supplements out there but I've listed these handful of supplements that actually have studies backing their effectiveness. Notice I didn't list Ginko-biloba as the studies have been inconclusive. The more you read into these they may make sense for your situation.

As a former wrestler I used supplements to keep me going when I couldn't use food for nutrition. When used in conjunction with diet and exercise it's a powerful thing As a 37 year old cancer survivor who's body was devastated by tx and surgery I can run at pretty high pace now and I look and feel amazing. My mind's pretty sharp as well, especially considering the dull of utensil I started with.

Memory games, reading...you know, using the noggin. Usually exercising the mind will help sharpen it.

Lowering stress as stress will impair thinking as well (exercise, yoga, meditation, sex, etc...)

Sex...yes, sex will help you think believe it or not. Google it if you don't believe me

Counseling: I started counseling to help with the PTSD...cancer is very tramatic, both personally and to those around you. Counseling allowed me to work through some of the feelings and emotions I was going through and to help those around me (my wife and kids) cope with the experience. It's given me the tools to help myself and an outlet for my frustrations and fears.

Anyway I know this is a short novel, I apologize. I just wanted to give you food for thought as I'm no expert, just a fellow survivor trying to navigate my way through this crazy journey. Hopefully there is something useful in this reply.

Good luck

Eric

Hank,

I'm a CPA and my cities' Vice Mayor. I went thru periods late in Tx where I was unable to hold a thought more than a few minutes but I found that like just about every side effect we all endure due to this barbaric Tx, time will help you heal. We all can react differently but I feel most of us recover greatly. Today, 5 years post Tx, I feel just as capable as before sans 5 years older of course.

Hey Hank - I had similar trouble to what you describe. I'm still finding that I'm watching somewhat familiar episodes of Law and Order that I think I might have seen while undergoing treatment!

I was really worried about going back to work especially when I found that I forgot to fill the dog's water bowl or turn off the stove after I made tea. I was concerned that I really had no business at all even going back to work - but I did, and I struggled and I found that I'd lose my train of thought mid-sentence with no hope whatsoever of the thought coming back to me, I kept lists upon lists and multiple calendars and fretted that I'd never feel like the real ME again. Now, 6 months post treatment, I can honestly tell you that my brain is back! I missed it for a long while though!

When I complained to my MO about my memory he said "you don't want to remember this." There are still some holes in my memory (Law & Order...) but I'm not worried too much about retieving those especially now that I can remember what I did yesterday and where I'm supposed to be tomorrow!
Take care and go easy on yourself!

Yes, Alex and I too suffer chemobrain (and me without having HAD chemo). What this tells me is that the stress of the whole debacle must have had some effect on top of the physiological changes brought about by chemo. I also agree with Eric that there is a degree of PTSD which manifests as irritability and mood changes - especially when a doctors appointment is on the horizon.

Like Jenslp, Alex can watch the same episode of Law and Order over and over again, without quite remembering the storyline. He loves his sci-fi books, but was unable to follow storylines for about 6 months after treatment. TV shows also became the "take your brain out and put it on the coffee table" type. Repeats were favoured as well. Alex had more chemo than many (triple therapy over 4x3 week cycles, 6 weeks break, then cisplatin split into weekly doses with his radiation x 7 weeks) so we wonder if the effects were cumulative thereby causing an extended period of confusion, memory loss, trouble keeping his focus and misunderstanding communications.

Whole conversations disappear into the ether and I find myself repeating myself often or checking if he remembers the conversation about ...before launching into an update. The thing I have noticed most is that he gets the order of our conversations muddled and will respond to something I said two topics ago. This causes some grief as his brain seems to connect the dots to make a logical picture for him but might bear no resemblance to what was actually said. I don't know if anyone has ever worked with alcoholics but it reminds me of them. I have worked with alcoholics so badly affected their short term memory is nearly completely gone. I remember one particular gentleman who, when asked about what he had for lunch, would give me an elaborate and detailed response which was completely made up(to my knowledge, Morriset hospital never served Beef Wellington or Chateaubriand for lunch). I never got the sense that he even knew he was making it up. Somehow his brain substituted a plausible scenario for the missing one, and by the time it came out of his mouth, he believed it to be the truth. Alex is nowhere near this bad but it seems to be a similar mechanism.

We are 12 months out and Alex is still stuggling to focus although improving every day. What would have taken 15 minutes to do BC, might be a couple of hours today. He writes lists for everything.

I was complaining about this to a friend of mine who had undergone chemotherapy 5 years ago and who understood the issue immediately as it had happened to her. Her doctor put her on an anti-depressant believing her to be depressed and she found her ability to connect thoughts improved like magic after about 3 weeks on treatment. Alex has been on antidepressants for 2 weeks now and whilst we have not noticed a full return to cognitive function, I have noticed he is more inclined to tackle a problem that he would not have even bothered with a month ago. He is also more inclined to perservere with a problem for longer than 2 minutes.

I am assured by others that thought processes do return to normal and the breast cancer survivors I have spoken to who have undergone 3 cycles of triple chemotherapy have quoted 12 months as the point where they feel normal again. Not sure how this matches with OC survivors who tend to have slightly less chemo but closer to the brain???

Like Eric, I also wonder if hormones are out of kilter and obvious culprits would be testosterone and thyroid levels which can be checked with a blood test and corrected with replacement therapy.

Well I seem to have found my culprit. I had paid very close attention to the onset of the fog this week and discovered that it happened with hours of taking my post chemo steroid, dexamethasone (decadron). I take these pills the three days following my cisplatin doses which are on Mondays. I noticed this past week that my deepest fog was on the weekend. Saturday and Sunday was the worst. But by Monday, I was basically clear minded and able to function almost normally. And then all day Tuesday as well. I did not take my decadron until late in the evening last night. Lo and behold, within an hour or so of taking it... the brain fog started. My lucidity started to slip, all the symptoms I had described ramped up. So it seems that the decadron is what is doing it. Looks like I am affected for the three days I take it and then it takes another three days to get through my system and by the time Monday rolls around for chemo again, it wears off, only to start again when I take them on Tuesday.

So ... while I am not happy about these side effects, at least now I am fairly certain what is causing them and that they wear off after I stop taking the decadron.