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Chemo fog

Gymmom94
Posts: 6
Joined: Feb 2018

I’m dealing with chemo fog and memory issues. How long is this going to last?  Worried about working.

po18guy
Posts: 989
Joined: Nov 2011

This phenomenon is being increasingy studied. As far as is known, there is only one drug, Methotrexate, which crosses the blood/brain barrier. If that is the case, then the question has arisen as to what actually causes this malady. It seems that more and more researchers are leaning toward the theory that "chemo brain" or "chemo fog" are related to Post Traumatic Stress Disorder (PTSD).There is little doubt that stress, anxiety and almost absolute uncertainty accompany every cancer jouney. It has been likened to a war, and bears more than one similarity to physical battle, as it affects both mind and body. In fact, the fog of war has been written about and the similarities can be seen. https://en.wikipedia.org/wiki/Fog_of_war

What to do about it? It does seem to subside with time spent in the "new normal" of post-treatment life. Counseling is certainly always an option. It may be the only medical/psychological option at this point. Personally, having some belief-based foundation or rock to cling to has helped during and after treatment. Simply returning to work - to the comfort of a known environment, familiar co-workers, a set routine, etc. may help by itself to alleviate much of what you are feeling. However, it is important that fellow workers and supervisors remain as sensitive and supportive as possible as you make the transition. Again, the truism that time heals all wounds applies here. 

As to worry, it is completely natural, occurs to each of us, and is absolutely useless. Again, there are methods of dealing with worry. In certain cases, I suggest writing each worry down in a spiral notebook, then crossing it off when it fails to materialze. That way, you are taking charge over worry, asserting yourself and producing documentary evidence which demonstrates that what we worry about almost never manifests itself. This provides both routine and reassurance. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3256
Joined: May 2012

Gymmom,

While I have not researched this to the degree that Po has, I must agree with all he says as probably correct.  Like almost all chemo side-effects, who gets it and who does not hits mostly randomly, and is not guessable in advance.  Similiarly, how long it will persist is unknowable either.  Because chemo fog is to some extent subjective and not exactly quantifiable, the medical community is not much motivated to study it or address the issue.  In this regard it is like all psychological issues; it does not ordinarily kill, so funding is sparse.

Following a severe head injury 30 years ago, I developed severe vertigo.  I have not experienced it again until three weeks ago, when I developed the flu and an ear infection.  A horrible experience, which besides severe dizziness causes confusion and inability to concentrate. In other words, many similiarities to chemo fog.  When I went to the doc for a follow up two days ago I related this, and she perscribed the the med available -- the same med I took 30 years ago.  Apparantly, no progress has been made against this condition. Chemo fog is similiar.  And the med causes sedation, making it WORSE than vertigo itself.  I will use it only to address severe episodes.

Usually vertigo will pass after a month or so, treated or not (its cause, unlike chemo fog, is actually known: problems with the semicircular canals in the inner ear, which produces balance).  Chemo fog, of which I had a bad case, ordinarily takes longer.  But there is no exact number that we can share: It might last a month, it might last five years.  I fully believe that I have some symptoms of it today, eight years later.  But I am unaware of any neurological test that can establish this.

You will have to assess yourself and determine when you fell safe to drive or do the activities required at your work.  I would eat healthy/lite, and exercise my mind as much as possible (card games, chess).  Learn a foreign language or to play a musical instrument, since these activites will seriously exercise you higher motor skills.  After I recovered from my accident, from which I pulled windshield glass out of my ear canal two months after it occured, I discovered that I was much better at learning languages, and I became a tutor for years in college at somthing called Mathematical Logic, someting I had no taste for before.  I later stated that the wreck "knocked some sense into me."   I have read of cases of people with severe head injuries who woke up able to speak foreign languages they had never been exposed to before.  How the mind works is very little understood.

These are not clinically recognized activities to end chemo fog, but make sense, and cannot be harmful.  Sleep is curative of much in the mind. And most definitely avoid sedatives or alcohol.  What I have written is strictly what I have experienced and seen in other, not derived from any study or published reports.  Good luck,

max

Evarista
Posts: 254
Joined: May 2017

I agree with Max and Po.  Basically, this is "a thing" that many, if not all of us, have experienced or are still experiencing.  If you google "chemo brain" and look at the info provided by the Mayo Clinic and the American Cancer Society, you will find information and suggested approaches to improving and coping.  There is an interesting article in today's NY Times (Health Section) that strongly supports the idea that excerise can be helpful.  

On a personal note, when I was at my worst (~9 months), I literally got lost in my 6 ft X 6 ft bathroom one night. Could not find my way out, which was pretty darn scary and pitiful to say the least.  But I can now do almost everything that I could do before I got ill: crosswords, about half of the "evil" level Sudoku puzzles, balance my checkbook, drive the car, etc.  Oddly, I still cannot follow a recipe, so baking is still off my list of activities.  I encourage you to try to do things to keep your brain and body as active as possible.  There are some free "brain-training" apps at the AppleStore, if you have an iPhone/iPad (I use "Elevate"). Best of luck and try to stay positive.  After all, you wrote a complete sentence up there!  I could not have done that at my low point.

po18guy
Posts: 989
Joined: Nov 2011

If you anbolutely have to have one: you can now blame virtually everything on chemo brain, and no one can truly disagree. Still, getting back to routine - even a new routine which is at first frustrating - is comforting to the mind. All of this must be balanced against what would have happened without treatment. That is the base line. When folks ask how I am, I tell them "I am delighted to be anywhere." 

One other thing: You must be alive to have complaints.

Gymmom94
Posts: 6
Joined: Feb 2018

Thank you, this help. I have had rituxan and Benamustine in 2015. A reoccurrence in 12/2016. R-chop in 2017 and a stem transplant last July with heavy chemo, before. Just found out my job was filled. I will have to apply for a new one. I was told I may have PTSD...

po18guy
Posts: 989
Joined: Nov 2011

Imagine for a moment that you are leaning aginast the railing of a bridge over a river which flows into the ocean. It is a warm, sunny day with a slight breeze and the sunset is absoutely gorgeous - so visually stunning that a camera cannot capture the beauty. Words cannot describe it. As you attempt to take all of this beauty in, you suddenly lose your balance and fall into the river! A total and compete shock! After the initial impact, you are sinking and disoriented - your entire life has been turned upside down!

How do you react to this? Do you simply sink to the bottom, thinking, "Well, I guess this is the end?" No! You get your bearings, struggle to the surface, take that life-saving breath of air and then swim to the shore, noticing that the dirt and mud of the river bank are now strangely comforting. You are wet and dirty, but thankful for being alive. Time for reflection and recovery come after this. The lesson learned lasts a lifetime.

We are wired for life, not death; for struggle, not surrender. Whether or not we overcome the challenges that life places in our way, we are stronger for having struggled against them.   

Gymmom94
Posts: 6
Joined: Feb 2018

Thank you, PO... I’m still here to help others. Just the reminder I needed.

Nellie4579's picture
Nellie4579
Posts: 16
Joined: Dec 2017

This is a perfect description of what my life has been like for the last 6 months. I wish i had a way with words like you do, everything is just black or white with me and i tend to keep my emotions in check but your post got me in the feels for some reason.

po18guy
Posts: 989
Joined: Nov 2011

From time to time, I address lymphoma patient groiups. For those in the shock of initial diagnosis and those beginning to feel the effects of treatment, encouraging words come by way of analogy. Many express the feeling that they cannot endure treatment, but they are too narrowly focused - a natural human reaction. We fight this disease because we love. We love those around us and they love us. Love is a sacrifice - it is not free. Thus, we throw ourselves into the fire out of love - the strongest force on this earth. No other reason motivates as well. No other reason takes us out of our "poor, pitiful me" mindset and re-focuses us on our loved ones.

For those who worry about "being a burden", I ask what is love? A sacrifice. Love is proved during such low points in our lives, transforming them into high points, if you can imagine that. If we give up, we deny our loved ones, when we have spent our lives sacrificing on their behalf. Suffering is very difficult to endure, and even more difficult to find meaning in, but love is a pretty good single-word answer.  

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

“Sometimes analogy is best” by default means that it is sometimes not best. I like to deal with straight facts. I’m ok you’re ok and all is well. Maybe you should become a priest? Or a yoga instructor? Get those free trips to symposiums? You are definitely a legend in your own mind. Still I appreciate your views. Smart man! I always enjoy your posts. Thanks (seriously). Hope to meet you sometime at one of your conferences.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3256
Joined: May 2012

Your Snarky response, Shady, does not speak well for you.  This despite its "serious" bit of "thanks."

"Free trips" was a nasty, nasty dig.  How would you know them to be "free"?  I have known Po much longer than you, and have never heard him specify such a thing. 

I know that Po's trips are for others, certainly not himself.  You paint a man who has done incalculable benefit to probably hundreds of patients as some sort of gold-digger. Three relapses and 19 chemotherapy drugs to gold dig: what inefficiency !  His story is interesting because it has no parallel anywhere (so say his many doctors themselves). Added to the readership here at CSN, the number Po has assisted may be in the thousands or even tens of thousands.

I would say that Po, a married man, already is in his proper role in life:  sharing thoughts and insights that most appreciate, but some few cannot.

And his information is overwhelmingly "factual": information on drugs, clinical trials, and specific doctors and treatment options that are not compiled anywhere else on earth, to my awareness.  There is no such  thing as an absolute "factual/spiritual" bifurcation in any patient, ever.  To insist upon such is rigid, false, and a sad limitation in any human being.

max

ShadyGuy's picture
ShadyGuy
Posts: 386
Joined: Jan 2017

I guess my sense of humor does not fly with you. I meant it in jest and I truly do enjoy Po18Guy posts. I don't know this individual personally. However after reading the posts for a few years I asked myself "who is this po18guy fictional character?"  So I did a  very simple onetime Google search on the pseudonym. It is all over the web. Possibly used by several people. Who knows or cares? The “Po“ character on here may not even be the same poster as those other sites. Anyway, someone using that pseudonym, is an expert on everything from Charismatic religion, firearms, motorcycle racing and cancer to demons and spirits. Always the smartest brightest guys on every topic. Always deriding people not to use the web as a source of info then constantly quoting. I guess this “virtual character” is just a lot smarter than me. Thats ok, lots of people are. Don't know anything about the people using that pseudonym personally and have no desire to do so. I Don't know or care to know their actual names are. Its just not something I think or care about. I have bigger fish to fry.

In any case Max I am here because I have transformed relapsed follicular lymphoma and am about to start a very nasty rigorous therapy which I very well may not survive. Why are you here? Nothing better to do? Lots of free time? If so thats OK. You don't bother me the way I obviously bother you And your posts are helpful and encouraging to many members, including me. I don't judge people the way you do. You have me pegged as a pathetic individual. This is your little kingdom. I beg your pardon for intruding. Go for it sport.

I don’t even think about this when I log off. Its not a big part of my life, just a source of information. Who knows, maybe “Po18guy” will cure cancer and I can read about it on here.

 

Evarista
Posts: 254
Joined: May 2017

I find that finally, 13 months after diagnosis (DLBCL, double-expressor) and ~9 months after completing DA-R-EPOCH, my fog is noticeably lifting.  Even more importantly, but related, I am becoming once again interested in doing things that have been off my horizon for a long while: gardening, cooking, crafting, community service, etc.  It's a nice feeling.

ShadyGuy: I wish you all the best with your upcoming therapy.  That you not only survive, but thrive.  Your presence here has lifted me, as have so many others.

As to the rest of this conversation: we can agree to disagree, right? Be well, all.

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