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Is this "chemo brain"? Mental health side effects?

Is this "chemo brain"? Mental health side effects?

Posted by Silver on Aug 11, 2019 10:07 pm

Maybe I'm ultra-prone or ultra-sensitive to this, because I am also being treated for chronic depression (quite successfully, actually), but I'm finding that the (I assume) chemo medications (because I can't see how radiation in the pelvic area would affect my mind) are messing about with my mental health / cognitive faculties. Is this "chemo brain" or should I be talking to my doctors about whether I'm losing it? (Hmmm... maybe the answer is "if you have to ask, do it....")

Anyway, some days, I am weepy - for no apparent reason. Well, sometimes I'm just really tired. But it's annoying as all heck to be weepy as a 3 yr old when you just need a nap. Or other times, I will be fairly manic in terms of being chatty and impulsive.  I'm good at isolating where my emotions are coming from - I mean, seriously good at it. And medicated so I don't experience random depression or elation. So it's absolutely annoying to have random mood swings like this. 

My dreams are just plain weird - intense, memorable, exhausting, and STRANGE. Either the drugs have enabled my subconscious to make a breakthrough in communicating with me (in which case, would it PLEASE tone it down!) or the drugs simply cause bizarre dreams. I usually never remember my dreams (which I rather strongly prefer, as it turns out). Not only do I remember these ones, but I wake up from some of these dreams simply exhausted. (Last night, I was solving work problems while outwitting sea monsters. Not quite Sharknado - but similar). The other thing is that some of the dreams are SO realistic that I think I am awake, and then when I do wake up, I am disoriented. Sometimes, I go through multiple "wakings", where I dream myself through my waking routine, something weird happens, and I suddenly realize "Oh, I'm dreaming", wake, rinse, repeat. When I finally do actually wake up, I'm just not sure whether I'm really awake, for a while. That is just plain disconcerting, frankly. 

And then there's the daytime - constant earworms. OMG. I've taken to listening to classical music in the evenings just to stop words repeating in my head from songs I may or may not like. It's obsessive. And intrusive, and very annoying. I guess it could be worse, but it's bothersome. 

My concentration is crappy, as are my abilities to understand simple things. My DH was rather concerned this morning when I kept insisting that our postal code was included in a list, when it wasn't  (I was completely mixed up - eg. the list was X1A to X1M and I was saying we were on it. We are Y1M. That kind of simple mistake. Postal codes randomized). That sort of thing happens regularly.

I've decided to give up some of my hobbies that I just can't concentrate on, for the duration. I'm having to really watch myself at work and with other activities. I'm avoiding driving whenever possible.

Would love some reassurance that a) It's not just me, and b) that it will go away after chemo is over.

(ETA - maybe this should be in the "emotional roller coaster" forum, but it seemed more applicable here).
 

Re: Is this "chemo brain"? Mental health side effects?

Posted by Brighty on Aug 11, 2019 10:24 pm

Silver‍  hi!  I'm not an expert  but chemo brain is a real thing.   many people  have posted here and have said it has a huge effect.     I'm sure others will chime in to tell you about their chemo brain experiences.   I know my fiance had chemo brain as well as very weird dreams too.    I would imagine  that dealing with cancer,  depression plus all the meds can certainly  take toll on a person.     I've also heard that chemo brain can last a while even after treatment  is done.   It can take a while to exit your system.      Even as the caregiver  I found that my brain was not working  the same any more.   I couldn't concentrate or function  the way I used to.   I'm only now starting to get somewhat back to normal functioning.       So I can  imagine having cancer and having  chemo in your body  would do a number on someone .   So I would say everything  you are going through  is quite normal considering.     Your might want to mention to your oncologist  what you are experiencing.   I'm sure others will chime in soon to reassure you .    

Re: Is this "chemo brain"? Mental health side effects?

Posted by Cynthia Mac on Aug 12, 2019 6:12 am

Silver‍ , Dad was complaining about “chemo fog” yesterday when I was out visiting him. Dad is a long-time sufferer of depression as well, and his medications seem to be barely keeping him in afloat some days.

I cautioned Dad to be mindful of what types of tasks he takes on while he’s on Chemo. I explained that it’s important to avoid tasks that require a lot of concentration right now. 

To me, the shock of a cancer diagnosis can last a long time. If you can acknowledge the role that could still be playing in your depression symptoms, you might find it easier to accept the “weepies.”

As Brighty‍ Says, even caregivers can have issues with coping - A month later, I’m still grappling with Dad’s diagnosis, and waking in the night with words echoing through my head. I’ve resorted back to my meditation and mindfulness books, but I still woke up at 3 and 5 a.m. tonight, with the “tapes” playing over and over again in my mind.

I’m getting very close to calling the cancer centre and booking an appointment for “a chat.” That might be something you might want to consider, too. I recognize that another appointment is just want you need (kidding), but if what we’re doing isn’t working, then we have to look to something that might.

I wish you all the best.

Re: Is this "chemo brain"? Mental health side effects?

Posted by Silver on Aug 12, 2019 7:17 am

Thanks Brighty‍ and Cynthia Mac‍!

Reassuring that I'm not totally out to lunch on this. I did talk with the social worker in the beginning. There was SO MUCH to process. Should follow up and perhaps ask to speak with the psychologist.

Re: Is this "chemo brain"? Mental health side effects?

Posted by ACH2015 on Aug 12, 2019 7:37 am

Silver‍ 

Re your questions:

Would love some reassurance that a) It's not just me, and b) that it will go away after chemo is over.

My experiences:

a) - No, its not just you going through the mental health changes with both depression and chemo. Although each experience will be unique to the individual, all of us will deal with the mental side of cancer and its treatments.

b) - Will it go away? Depends who you ask and their experiences. I am two plus years out from chemo - no the lack of concentration and other cognitive defects have not gone away in my case. If you are on modern SSRI medications, your brain will undergo a transformation as well. Weepiness can be related to many things. Examples include finally allowing the mental emotional pain out, the chemo drugs, the SSRI's (depression meds) allowing your emotions to flow easier without the other part of your brain holding back your emotions.

I've said it before - we will all experience unique side effects and responses to any treatment.

My suggestion:

1) monitor and record your cognitive ability changes (good and bad) as best you can, so you can provide information to all parties during your treatment plan.

2) discuss dose escalation / adjustment of depression meds with your mental health (psychologist vs. GP) provider.

3) Having cancer and dealing with depression is a full plate scenario. I speak from experience. It is challenging and frustrating to say the least. You have multiple fronts of treatment and its important to seek and maintain therapy when needed.

I've found the social worker at the hospital much better to deal with re my (mental health) cancer issues than my psychologist. Sometimes you need to take a multi pronged approach to find the best fit for you.

It's scary to read how uneven the playing field is for patients going through cancer treatments. Some hospitals have a very good triage plan in place for cancer treatment. By that I mean actually making appointments social worker appointments for their patients along with the oncology appointments, because they recognize the importance of doing both hand in hand. Other hospitals leave you to fend for yourself, and your coping ability depends on your own advocation and research toward available resources.

I have not given up, and continue to seek the answers to my questions on my long term effects of chemo, and immunotherapy re my personal issues. I have come to accept these deficits as the cost of doing business with cancer. No doctor is going to sit down with you and provide any of us with the known effects of cancer drugs. If they did no one would take them - right? In their (doctor's) defense, not everyone will experience severe long term side effects, but for those of us that do, its a struggle we didn't expect, and have to come to terms with in our own time and as best an individual can.

The frustrating issue I hope to minimize for you is the years of asking "why" of my many medical specialists that have been met with shrugged shoulders and not too many answers. Oncologists in all facets of cancer care (medical, surgical and radiation) deal with our physical being, social workers, psychological and psychiatric interventions (plus medications) deal with the emotional side of those and other treatments to fix the emotional damage we suffer.

Multi pronged interventions are our best means to help patch up our minds after the dust settles from all that treatment, and what's left of us at the end.

Honesty is the best policy, and I hope my honesty helps.

ACH2015




                         
                         

 

Re: Is this "chemo brain"? Mental health side effects?

Posted by Manoushka56 on Aug 12, 2019 7:57 am

Hi Silver,
one thing I can tell you, is that you have a beautiful penmanship and you have not lost your sense of humor...that tells me you still are all there!
I think it is a good thing to discuss of all this with a psychologist, maybe with one who is used to cancer patients would be better. Because I think that working to survive from a cancer, already takes a toll on us and our peers.
I did have chemo brain, and I still experience funny things even six months after chemo!
I too am on medication, but for my anxiaty, and it works well. But, just like the weather, some days are better than others.
I have not yet seen a psychologist, although I did research for one in my area. I sincerely think that cancer is as much physical as it is psychological. And I know I need to talk about the real feelings I have sometimes, and how I cope with problems. I need to free my mind in order to help free my body. This is my next step.

It is a difficult journey, but like everything else not so smooth  in our lives, there are lessons to be learn in order to keep on moving happily. 

Never hesitate to ask questions to your pivot nurse, especially if she is as nice as mine. She will put you at ease, or check with the doctor for you.

I wish you the best.

ps: please forgive my penmanship, my mother tongue being French, my English is not so perfect!

Re: Is this "chemo brain"? Mental health side effects?

Posted by Lacey_adminCCS on Aug 12, 2019 10:28 am

Hi Silver‍ 

Thanks for posting. You are definitely not alone. I hope it has been helpful to hear from others. Cancer or its treatment can affect cognitive function. Cognitive problems can develop during or immediately after treatment. They can also develop years later.

We have the following information on Cognitive Problems available on www.cancer.ca please check it out! It has information about causes, coping strategies and so much more. I also think you may benefit from looking over a booklet Life After Cancer Treatment.

Some suggestions for managing cognitive problems include the following:
 

Medicines that may help with cognitive problems include: (Talk to your doctor)

  • stimulants to improve concentration and memory
  • antidepressants, if cognitive problems are due to or made worse by depression
  • medicine to make you less drowsy if you are taking opioids, such as morphine, for pain

Cognitive training and cognitive rehabilitation may be given to help you improve cognitive skills and cope with cognitive problems.

Occupational therapy and vocational rehabilitation may help you with everyday tasks and job-related abilities.

Counselling and support during cognitive rehabilitation can help you adjust the rehabilitation as your needs change over time. The counsellor can give support to both you and your family.

Even if it is "chemo brain" it is definitely worth talking to the Doctor about and asking them to assess and provide support!

What are some of the hobbies you can't do anymore?

Keep talking to us here, we are listening!

Lacey

Re: Is this "chemo brain"? Mental health side effects?

Posted by Silver on Aug 12, 2019 1:47 pm

Thanks everyone! When the chemo oncologist talked to me about the side effects, I had told her I already had some of them, but there's being able to cope with what you are used to, and coping with augmented and/or new and wacky interpretations of one's conditions - well, it is a whole new rodeo. 

ACH2015‍  - Thanks for sharing about your own battle with the brain weasels. It really helps. While my treatment is fairly short, you've given me the reason I needed to investigate getting some support. I was feeling like there are so many other people who are dealing with long term treatment that perhaps I should stick with my PCP, but he's not a cancer specialist, even though he is a psychotherapist. 

Manoushka56‍  - thank you - I am managing to stay positive fairly well.

Lacey_adminCCS‍  - I'll take a look at those resources. Thanks!
 

Re: Is this "chemo brain"? Mental health side effects?

Posted by Chichimus on Aug 12, 2019 4:46 pm

Silver‍ 

Definatley not just you. I hadn't heard the term until  into my treatment for a bit but once I did a lot of things made sense. I was also put on steroids for a while and that was an emotional rollercoaster I can tell you. 
I'm 4 months out of treatment but am still 'foggy' some days. Motivation can get low and tbh I find it too easy to just surf the net sometimes. Other days are much better. Hopefully it will all fade away along with the skin irritations and minor nerve damage. 
Just have to remind myself that without treatment I would have had a few months at most. Hey, I can at least now say that I've missed my own funeral, something I used to joke  about doing way before all this happened :)

Re: Is this "chemo brain"? Mental health side effects?

Posted by SpeedyStill on Aug 12, 2019 8:18 pm

Silver‍ 
Signing up for Chemotherapy Treatments especially aggressive dosages is signing up fo two things a chance for an extended life and the side effects that are short and long term.
My wife at the time who is a Nurse and worked for an Oncologist for a few years said to me it is your choice. You can take the treatments or decline the treatments. For me I chose extended life. I took the treatments and got 9 years and counting of extended life.
The Cancer Center does not make much of an issue with side effects and why should they they are promoting life like we all should be.
Chemo Brain real yes but I will take it for life because in reality it does not play a big part in your life you are still a full functioning human being. Anyway it is a great excuse if you do something just a little stupid or you forget something at the store.
The palms of my hands and the souls of my feet are still numb after 9 years but I will take life. I could and still can run and play with my grandchildren, although a little older and slower now.
Fatigue it doesn't really go away but I chose life. I have been able until lately to keep up with my grandchildren. Tired at night but that helps with sleep.
How I should have started this is by saying that everyone's journey with Cancer is unique to them. So you may have no side effects or you may have different side effects however the ones I mentioned above are quite common.
A trauma to the body under any circumstances will cause physical and or emotional changes to the body. Some things are mirrored by people who are emotional attached to the person with the trauma.
Chemotherapy Treatments of course is a personal decision however no matter what I choose life.
SpeedyStill 
 

Re: Is this "chemo brain"? Mental health side effects?

Posted by WestCoastSailor on Aug 12, 2019 11:43 pm

Silver‍ 

I just wanted to pop in and say "It's real."

My chemo teach nurse talked about two theories behind "chemo brain." There is a huge change going on in your life. You have a lot to think about - some of it logical and some of it emotional. That change alone can affect memory and cognition. There are a lot of moving parts to chemo treatment - appointments, coordination, all kinds of new symptoms, and just facing mortality.

On the other hand many of the drugs do have a cognitive effect. Dexamethasone is well known for some of its psychological side effects - the high in particular. There is a reason people are encouraged not to drive after the massive doses of Benadryl that we are given. And that isn't even getting to the treatment drugs themselves.

Acceptance is part of the solution. I can't speak to the "brain weasels" and depression but

ACH2015‍  has done his usual excellent job of that.

Thanks for keeping us up to date on your journey.

Angus


 

Re: Is this "chemo brain"? Mental health side effects?

Posted by Smashley on Aug 13, 2019 8:07 am

If you are experiencing depression definitely talk to your doctor. They can give you something to regulate your mood. But there will be side effects to any medication so I would gage the pros and cons with research. I take lots of vitamins daily including probiotics and it really helps my body feel better which helps my mind. Happy to answer questions, I have been through pretty much everything. You will get through this and you will come out stronger. 

Re: Is this "chemo brain"? Mental health side effects?

Posted by Silver on Aug 13, 2019 11:19 am

Smashley‍ - I was specifically told NOT to take vitamins. Nothing that I wasn't already taking before treatment, basically. My radiation oncologist pointed out that they are trying to kill cells, not repair them, and that mega doses of vitamins would be used by fast growing cells (including the cancer) to build/repair and replicate themselves. 

Re: Is this "chemo brain"? Mental health side effects?

Posted by Marylaf on Aug 13, 2019 1:37 pm

Hi Silver    sounds reasonable but I have never heard it before. I would ask him/her what research data he is basing this on. When I started chemo in 2016 I took a list of everything I was taking including vits and minerals to the ca clinic pharmacy. I had to quit the anti depressant (welbutrin) I was on as it apparently conflicted with chemo I would get. Welbutrin gave me very vivid dreams as well. They were not intense like yours but nightly and often I awoke tired and wished the dreams wld give me a break. I am now on Effexor which has no side effects for me that I am aware of. And I have not remembered a dream since.
For me chemo brain is forgetting what I am saying in the middle of a sentence. In a word,a"forgetful" which was very annoying and frustrating. I think age is a player here. If I was 50 instead of 65 plus, I wld know it was treatment. Now when I tell my senior friends they all say "Oh yeah me too!" So at my age I am continually assessing age or treatment? 
Can I ask what hobbies you have set aside? You have mentioned music before. I live for music... that is what keeps me going. I play bass in 2 bands, one serious, the other,not. I am out most weekends playing festivals. But the desire to keep learning and practicing has gone. In another post which I cannot remember (lol), u mention the imp of music. That was so helpful to me as I had quit listening. While I play western and old rock and roll, I also love classical and tx to your post I am now exploring  and experiencing other genres. Tx 
Hope you and your doc come to a solution soon.
 

Re: Is this "chemo brain"? Mental health side effects?

Posted by Brighty on Aug 13, 2019 2:44 pm

Marylaf‍ .... I don't usually  do this ... I couldn't resist.  ...  I want to connect you with WesT‍  who is  also a huge music buff.   I thought the two of you may enjoy chatting.   

Re: Is this "chemo brain"? Mental health side effects?

Posted by WesT on Aug 13, 2019 3:11 pm

Marylaf‍ try jazz!  Every time I get into one of those moods where the usual stuff doesn't cut it any more I find some interesting jazz based genre to rejuvenate me.

I play bass as well but mostly by myself in my basement.  I do play with a band a few times a year but it isn't as serious as we would all like it to be.  All three of us had/have health related issues of late which prevent it from becoming more than it is.  Funny the music we play is not music I even listen to or like for the most part.... but it is fun!

What is you more serious band and where are you based?

Thanks Brighty‍ 

Re: Is this "chemo brain"? Mental health side effects?

Posted by Cynthia Mac on Aug 13, 2019 5:27 pm

Smashley‍ , when my Dad was diagnosed with (aggressive) lung cancer in 2017, and had to go through chemo in early ‘18, his oncologist took him off all vitamins except for calcium, and maybe glucosamine. Dad was taking a multi, Vitamin C and turmeric powder and the doctor took him off all of them. For chemo, he put him on Vitamin B12 and folic acid. His doctor gave the same reason that @Silver’s did - the chemo needs to be able to do its job, and high intake of antioxidants intercept that.  He did say, though, that Dad could eat as many oranges, blueberries or curries (for example) as he wanted - just not to take the pill forms.

There was an article posted on the site not too long ago about including high doses of Vitamin C for patients in treatment, however that appeared to be a fairly new concept.

Re: Is this "chemo brain"? Mental health side effects?

Posted by Charles on Aug 13, 2019 6:10 pm

Silver --

Are you on chemotherapy ?  Or are you on Lupron or some other ADT (= androgen-deprivation therapy) for prostate cancer ?

If it's ADT, there are lots of people with the same mental side-effects.  For some suggestions, look at

LifeOnADT.com


.  charles

Re: Is this "chemo brain"? Mental health side effects?

Posted by Smashley on Aug 13, 2019 6:42 pm

I decided not to continue treatments. Nothing was working. I was given 6 months. I’m going on three years. I take vitamin c, probiotic daily for gastrointestinal health, I rotate between echinacea and bee propolis. I also drink sencha green tea daily and mix in some sea buckthorn tea(leaves). I use a little frankincense oil daily as well (young living). It’s a lot but I’m used to it now. Almost second nature. 

Re: Is this "chemo brain"? Mental health side effects?

Posted by SpeedyStill on Aug 13, 2019 8:27 pm

Marylaf‍ 
I also am a senior and yes everyone has certain problems with aging and thier problems are real to them. I am 71 turning 72 in November. I was 62 I think I got the age right if not then it's Chem Brain. 
The point I want make is this. As long as I can remember if I complained of a problem not all the time however with some people they would say " oh I have that problem also". Then they would go on about thier issue. I always would like to say but never did "so you went through the same Cancer journey as I did" knowing full well that they never did.
It used to bother me however I learned that these people have no idea about what a person with a cancer history goes through.
Now that I am on my second journey with Cancer it is just as bad. But we are smarter than the average person and are able to hold our head high and move through all the clutter.
This community has been a God send, because I have found this group of people who can understand what I am talking about. The smart people, oops!! I might get in trouble for that comment even if it may be true.
Seniors are people too, we exist with a story that is sometimes lost to the younger generation. The thing they don't realize or think about is that they also will be Seniors some day.
SpeedyStill  Proud Senior

Re: Is this "chemo brain"? Mental health side effects?

Posted by Birdwoman on Aug 14, 2019 11:07 am

Hi Andy ACH2015‍ I was so excited when I read what you wrote... I
have not given up, and continue to seek the answers to my questions on my long term effects of chemo, and immunotherapy re my personal issues. I have come to accept these deficits as the cost of doing business with cancer. No doctor is going to sit down with you and provide any of us with the known effects of cancer drugs. If they did no one would take them - right? In their (doctor's) defense, not everyone will experience severe long term side effects, but for those of us that do, its a struggle we didn't expect, and have to come to terms with in our own time and as best an individual can. 

It is so nice to get confirmation as I have come to similar conclusions. I was led to believe (or willed myself to believe)  that I would go back to my old normal. And thankfully maybe some people come close. But not all, like you say, and it helps to understand why we were not told at the beginning. The diagnosis of cancer is such a shock, we need all our strength  to  deal with it and worrying about long term effects would not help us.  Another reason this site is such a blessing. Instead of wondering on our own what is going on in grief and confusion, we can ask each other and learn from each other. Thanks to all and to the admins Lianne_adminCCS‍  for the ongoing support and help. Wishing you Andy and everyone a great day!
 

Re: Is this "chemo brain"? Mental health side effects?

Posted by Silver on Aug 20, 2019 12:45 pm

Hi Marylaf‍  - I've stopped music lessons - I'm not very far along, and many of my treatments end up being at the same time. I find that my concentration, memory, and motor skills are affected, and so it's just maddening to try to practice because I'm unable to do the music I could do just a couple months ago. I have my kids doing lessons and am just having my oldest do double lessons for the duration. When i'm ready, I'll start again. Probably will never catch up to my kiddo, lol, but I'll be hopefully over most of the side effects by six months post treatment. 

I have other, more established, hobbies in the meantime that are keeping me going. Some days, I don't have the energy for those either. 

I figured since I can't do everything, and need to get some things done (eg. gardening - you can't just start and stop that, not unless you want all weeds all the time - that i'd have to pick and choose, for now.)