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"CHEMO-BRAIN"

chris t
Posts: 2
Joined: Oct 2009

I have recently discovered what I thought was just me, but turns out to be somewhat of an epidemic among cancer survivors called "chemo-brain". I noticed it immediately after my first treatment. I was in a constant state of intense confusion. I had to rely on others to keep my appointments, couldnt remember my age, names, some faces, dates and numbers, etc.. 21 years later, this is still going on, and just as bad if not worse. I've lived my life in a cloud and didn't know how to tell anyone. It is embarassing to say the least of a man who's IQ in high school was 156. I'm still intelligent, I just have troubles putting the pieces together. I have found this to be a major disability and hinderance to any careers I have attempted. In 20 years, I have had over 80 different jobs because I cannot concentrate enough to accomplish the most menial tasks without total distraction. There are no tests that I know of for diagnosis, but there is a drug that helps a bit called Provigil. Other than that, I haven't much hope. I have applied for disability many times and been denied. I'm losing my train of thought right now.....anyway, it's hard to get by without full cognance or whatever the word is I'm looking for. Right now I'm having a Dejavu of having already done this (I get these very frequently, about once a week or more).
If anyone has any answers for me, Please help!
ctheibault@yahoo.com
10/13/09

jmsuarez's picture
jmsuarez
Posts: 4
Joined: Oct 2011

I am a 4 yrs survivor and to this day I have "chemo brain". In the beginning it was very frustrating but as soon as I found out that it is a real condition brought up by the treatments I came to accept it but I never let it slow me down. There are a few things that one needs to understand, some memories are just dormant whereas some might be gone. Just keep a journal for a while and read it over and over. Ask others to write letters describing events and people in you life you might not remember,don't fret when you can't find the right words or memories, or if you dont remember a person's name...explain to them you still recovering from cancer and a side effect is chemo brain. Try and learn a new language, that engages the brain to pull memories stored within. The most important thing is to remember that you are still you and that you have survived cancer, even though memories are the casualties suffered in the battle.

hdolg
Posts: 1
Joined: Oct 2011

There is a special water called Kangen water, which is alkaline, anti-oxidant and more absorbable than ordinary water. There is a doctor called Corinne Allen who has an institute called Advanced Learning and Development Institute (www.brainadvance.org). She treats all kinds of brain function problems without drugs. You can look on her site, and click on the left on "Kangen Water". she wrote an article called "Water and the Brain" where she explains about the importance of proper hydration with Kangen water which has smaller molecule clusters and is able to cross the blood -brain barrier better and bring more oxygen to the cells, detoxify waste, and hydrate better so the brain can recover from different problems. She also has a DVD on Youtube that someone posted in sections called "Your Brain on Water". If you do a search for her name "Dr. Corinne Allen" you will find it.
If you want to know how to get a Kangen water machine, you can email me and I can help you. It is truly amazing and helps people with all kinds of problems. In addition, it is recommended by the American Anti-Cancer Institute as their No. 1 Recommended Natural Product to treat and prevent cancer! I can send you links, if you like.

All the best,
Hana

BuzzyBee1208
Posts: 6
Joined: Mar 2011

On your side have episodes I feel embarressed about. Took for a year. with radiation.

Mumjane
Posts: 1
Joined: Jan 2012

Hi
My son had ALL at the age of 7 when we still lived in UK. He received 3 years chemotherapy including lumbar punctures every 12 weeks. He also received 'Methotrexate'. At the time we wasn't told about late effects and even after treatment at the 'Late Effects Clinic' it was brushed under the carpet everytime I mentioned we had noticed a change in our son.
It goes without saying their priority is for us to have him still with us today which we can't be grateful enough for. But when he left primary school (where he received extra support for maths etc. as his teachers also noticed a change in him) and went to Secondary School, that his where it became more noticeable. Despite being given paperwork, letters from the hosptial etc. he didn't get much support and was almost getting detention for being so slow at getting changed in PE. Our son seems to have been left with very little motivation, he always seems lethargic and has cognitive issues. I have always tried to support him, but worry that I need to draw the line and teach him to become more independant for his own sake. We emigrated to Australia 3 years ago (which was also alot for him to cope with as he isn't keen on change) in the hope of a better lifestyle. We notice the healthcare system seem more thorough and my son was sent for a cognitive assessment at the first mention of his problems at his annual check up. The report has proved that there are definite signs of 'chemo brain' as I have found it is called on this forum.
My concern is he finished his treatment at age 11 and is now 20 years old and still having the problems. I am disappointed that it wasn't confirmed when he was still a child as there may have been more that could have been done to help (eg brain training). The difficulty I have now is 'mum' trying to tell a 20 year old how he can help himself and improve as he doesn't want to listen. We tried a year at TAFE but decided not to re-enrol as it was a waste (other than it taught him to get a train and connecting bus) despite missing the connection many a time. He is so laid back he is happy to spend all day every day in bed, but we are encouraging him to at least look for part-time work (to help him socialise). He has no idea what he wants to do and is anxious about what he is capable of doing. He tried a short time at a take-away, but said he couldn't keep up with the pace and was 'in the way' all the time. He hasn't got his driving licence yet either. I know with him it is 'one step at a time' but it is difficult telling people that don't know him so well. He comes across as being a 'lazy' teenager which is frustrating. Good thing is he has a few friends from his last couple of years at school here, who will pick him up and take him out. He also plays Futsal with them once a week. They seem to understand him and are getting used to waiting for him etc (and being late for Futsal) :)
Good luck to everyone having 'Chemo Brain' affect their everyday lives, but well done to you all beating Cancer!
J

bluerose's picture
bluerose
Posts: 1104
Joined: Jul 2009

I am a long term survivor who has chemo brain and have seen the medical field change over time regarding this issue. First it was thought that none of the chemo drugs crossed what they call the blood-brain barrier but now they know that some do.

We have a memory clinic here in Canada where I live that usually deals with Altzheimers and Dimentia but does testing on all sorts of other issues now regarding memory/confusion, cognitive stuff, and so I was referred there by my doc a few years back. I was fine on all the testing, scored high in fact, but they did see signs on my CT scan of a slight abnornality but it wasn't significant enough they said to be causing my issues, so back to square one.

The neurosurgeon said that they are seeing more and more long term survivors with this 'chemo brain' and I found it interesting because a neurosurgeon had now started to use our lingo and years back they would never have done that and didnt. Slow progress.

Anywho bottomline is that some chemo drugs do cross the blood brain barrier and at least one of the drugs I had was on the list. I forget the other drugs I had, big surprise, lol. So the neurosurgeon said that this wasn't a dementia or Altz. but could be explainable by 3 possible issues all put together. One is the chemo drug crossing the barrier, the other was the aging process and the third one was stress. It all made sense to me. He also said that side effects from any medications I was on, especially the morphine I have to take for my back, could contribute to the confusion/memory issues as well.

So bottomline for me is that chemobrain probably isn't the result of one thing alone but rather a combination of the above or some.

I can't have an MRI because I have a pacemaker, due to heart damage from a chemo drug, so they could not go a little further in looking at it. The neurosurgeon said that there is nothing you can do about chemo brain although some people have had some success with an anti depressant and something else but again I can't remember what the something else was. Oh wait I remember now, sigh, it was a drug that is normally used in the treatment of ADHD, ritalin. No thanks, I have enough medical problems than to try that too, for myself. I am already on way too many drugs for the rest of my life.

All the best,

Bluerose

vslesinski
Posts: 1
Joined: Apr 2012

I am an almost 8 year ovarian cancer survivor who experienced chemo brain. I still lose words and very often can't remember numbers. Pretty bad for an accountant. However, my way of dealing with it is through nutrition. My chiropractor referred me to a compounding pharmacist who is also a nutritionist. I have been consulting with him and owe my good health to following his advice. I eat organic food which eliminates chemicals, pesticides, food additives, and other offending ingredients. There is no "Pink Slime" in my diet. I also work out and lift weights. He also has me taking a variety of supplements based on my needs which have made a major difference. Due to the nature of the surgery I use bioidentical hormone replacement which is prescribed by my oncologist and is compounded in his pharmacy. This lifestyle change is also supported by my oncologist and physician. I had to search for physicians who aren't so quick to prescribe drugs and are willing to try other options. So I suggest finding someone like this practitioner. I am firmly convinced that what is in our food and drink is the cause of our cancers and will continue to ruin our health and even kill us.

SandyGMoore
Posts: 1
Joined: Dec 2012

I am an 8 year survivor of NHL. I still suffer from Chemo Brain. No it is not as bad as it was when I was going through treatment but it is a daily reminder of what I have been through. My memory sucks, absolutely no short term memory at all. I struggle for words, my daughter jokes about how she finishes my sentences more than I do. I have absolutely no attention span. I've never been the most intelligent person but I do consider myself smart. It has and still does have a very negative impact on me. Worse than anything is those who look at it as an excuse or oh you're just getting older, no one that hasn't been through it can seem to understand. So for all of us on here that are telling the same story what further evidence do people need to acknowledge that it exsists. God bless all of you for making it through this horrible disease.

shadow01's picture
shadow01
Posts: 15
Joined: Oct 2008

Yes, chemobrain is very real, and from what I've read, how severe and how long it lasts (up to permanent) depends on the chemo drug(s), the dosage, and the duration.  The article I read stated that Cisplatin (aka Platinol) is the worst for chemobrain, and both of my chemos had Cisplatin, and the second round of chemo had it at very high dosages, for 24 out of 25 (yes, 25) hours per day (24 on, 1 off) for a week, then two weeks "off" (first of the two, excruciating/horrifying pain, second in the hospital with neutrophill coundts around 0.015 (should be 1.15).

I can be in the middle of a sentence (or even a word), and forg ... what were we talking about?  Yeah, something like that.  Or, it'll be a word, usually a word I know quite well, that I just can't seem to remember.  Still other times, I'll know the word I want to say, but it's as if I can see that word on one side of my brain, but need to get it to the other side to be able to say it, but cant.  Fortunately, my friends all know to start cueing me if I run into any of those (e.g., "we were talking about ..." or  "you were saying ..."  or I'll give them whatever I can so they can tell ME what the word I want to say is---surprisingly, this works quite well).

 

asha09
Posts: 1
Joined: Sep 2015

I thought it was kind of funny that in order to write a post about chemo brain I was required to do this:

Solve this simple math problem and enter the result. E.g. for 1+3, enter 4.

Not so simple, if you've got your head in the clouds like most of us. I appreciate everyone's stories...my own is very simple...Stage IA ovarian cancer 4 years ago now @ age 26. I didn't just lose my ovary, I feel like I lost my mind, frustrating at any age, but especially in your vibrant quarter-life and ESPECIALLY if you are now trying to get into grad school except you can't remember anything you're isntructor has lectured on in class, that is, if you're mind hasn't wandered to the bird on the tree outside or the paint on the wall, that you're actually listening what your instructor is saying.

I am grateful to have found a community that can share in my, very real, plight rather than just think I'm crazy or stupid, I wondered if anyone has found ways to combat the low mental acuity and maintain some focus?

cif
Posts: 4
Joined: Jul 2015

Thank you for your post, I was a high IQ high functioning computer geek.  After Chemo and Herceptin I am now having to relearn basics including reading and writing, words, spelling, etc.  Your post summed it up EXACTLY. 

Chris, each person is different,  like you I got hit hard but medical field is clueless, my guess is metabolism or low body fat resulted in accidental overdose.  But everyday is ground hog day, I have to relearn the same things over again (kitchen, phone, email, family and friends names, and usually remember nothing of the prior few days), and like flaky-flake I try to avoid driving, but ironically you need to drive to get to doctors.  I used to help others, hold doors, help strangers load groceries; now I am on other end and when I fall out of blue (post chemo issue) like someone bumped you behind knees and boom down, strangers help me.  Husband still computer geek, and made it so DRAGON and other SW can figure out my chemo induces slurred mixed up words speech and help me auto type.  I have no recall of what I did professionally, I know I trained my husband years ago in the field, but we have tossed the towel in after repeated attempts for him to teach me back.  If you still have humor ... he says back to me ... you are now your Mother (a joke meaning I am now beyond able use of computer let alone design, program, and maintain them).

I miss me too, but worse, are those I cared for now having to spend huge dollars to get sitters and move into assisted living places that cost more than anyone I know can afford.  Try finding a lawyer or hiring AllSUP to help you file a claim or (some word that means fight the denial)

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