Chemo Brain Help?

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3c Dave
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Chemo Brain Help?

Postby 3c Dave » Sat Jan 28, 2017 2:07 pm

I searched the forum a bit and see a lot of you guys joking about something that drives me crazy...and I joke about too. Chemo brain. I am a District Manager of a very large construction company (one of the top 5 in North America) and my ability to keep things straight at that level has been dramatically altered. It's been 2 years since my surgery and I refused the 6 month post-adjuvant (I remembered the WORD!!!!) chemo but I still cant remember names and....well...you guys know. So embarrassing and frustrating! I see a post about using coconut oil and MCT oil to help symptoms...anybody having luck with this?!? I would try anything I guess. Walking into a room of people I've worked with for 10 years and remembering very few names scares the heck out of me. Wondering if this gets worse if I have to do something else like bag groceries or put widgets on whatchamacallits? Thanks for any help guys.

Much Aloha...
Stage IIIC diagnosis August 2014
28 sessions of Radiation and Chemo UW Cancer Center November 2014
Sigmoid and full rectum removal January 8th 2015.

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mypinkheaven
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Re: Chemo Brain Help?

Postby mypinkheaven » Sat Jan 28, 2017 3:29 pm

3c Dave wrote:but I still cant remember names and....well...you guys know.
Much Aloha...


I've read that doing "brain games" can help. Exercise the brain. There are ways to remember people's names - associate the person with some characteristic they have and connect their name to that characteristic or maybe the job they do. ie: Jerry is a jerk. I could associate Hawaii with you. The ocean - dive in the ocean - Dave dives in the ocean.
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SugarBubbie
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Re: Chemo Brain Help?

Postby SugarBubbie » Sat Jan 28, 2017 6:27 pm

I take multi vitamins (gummies for over age 50) started about two months ago....seems to have helped some with the chemo brain and several other issues I've had. Not perfect but every little bit helps

Rhonda
DX Stage II anal cancer 2007 age 57
Radiation 6 weeks, Xeloda/oxilaplatin
DX Breast cancer Jun 2011 Stage3 one lymph nodes
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chrisca
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Re: Chemo Brain Help?

Postby chrisca » Sat Jan 28, 2017 9:54 pm

If you're in Seattle part time, you might want to check out Dr. Dan Amen's clinic (http://www.amenclinics.com/) He does all things brain and can determine if something is going on that can be addressed. The process is to do imaging that looks at blood flow and can pinpoint areas that aren't working properly, then doing various interventions with diet, exercise, psychotherapy, etc. to improve brain function in the spots needing it.
Male, false negative colonoscopy age 48
DX: 12/2010 rectal cancer age 51
Stage T3N0M0 2 cm from anal verge
neoadjuvant rad/chemo Xeloda
Rectal resection (open surgery) straight anastomosis
Xeloda round 2
ileostomy reversal 11/2011
Successful adhesion X-lap 8/2013
Ongoing LAR syndrome but NED 5 years

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SEWHAPPY
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Re: Chemo Brain Help?

Postby SEWHAPPY » Sun Jan 29, 2017 1:31 pm

A recent thread entitled The Totally-not-funny-side-to-chemo-brain had a great link to recent research on this topic. Turns out bowel cancer can cause the cognitive issues!

http://www.abc.net.au/news/2015-11-03/r ... ss/6908076

Worth a read!
Female age 51.
CC diagnosed 10/13/16 at first colonoscopy.
Lap colon resection 11/21/16, removed ovary & fallopian tube.
T4N0M0, stage IIC.
Lynch negative.
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12 rounds FOLFOX done 6/16/17.

ibcaree
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Re: Chemo Brain Help?

Postby ibcaree » Tue Jan 31, 2017 4:42 pm

I feel your pain. I still have chemo brain 8 years later. Pre-chemo I had no memory issues, great attention to detail and ability to multi-task. Now I'm left blankly staring while in mid conversation searching for the word I want to use. I also feel like I have full on ADD as it takes so much energy to keep my attention anymore. It is embarrassing and scares me to think about how bad my memory will be when I'm elderly. The hardest part is knowing that people think you are an air head or making up excuses when you try to explain. I'd love to get some real help for this as well.

Sewhappy - Interesting article. I didn't have any memory issues prior to chemo though...only after chemo.
Diagnosed with Rectal Sigmoid Colon Cancer at age 33 11/11/08
Colon Resection Surgery 12/15/08
Stage IIIB; 4/18 lymph nodes affected
5FU 1/28/09 (12 treatments over 6 mos)
Mom to two boys age 12 and 10, and a beautiful post cancer baby girl aged 15 mos!
Age: 41
NED as of July 09!!
"God can restore what is broken and change it into something amazing. All you need is faith." Joel 2:25

AbbyDoo
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Re: Chemo Brain Help?

Postby AbbyDoo » Tue Jan 31, 2017 8:55 pm

I would reply butt cant find the key board or the two pair of glasses on my head
53 yrs old
4/30/15 colonoscopy Mass found
5/21/15 staged 3 C rectal cancer
7/3/15 finished xeloda and radiation 28 rounds
9/30/15 LAR
10/29/15 picc line installed
11/2/15 start chemo 5 fu Oxaliplatin
3/7/16 Finish Chemo
4/29/16 Ileostomy Reversal.
7/13/16 colonoscopy clear.
CRC survivors know there Sh%t

ozziej
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Re: Chemo Brain Help?

Postby ozziej » Wed Feb 01, 2017 5:51 am

Just wanted to share my experience as it's relevant to this thread. Despite not having any chemo (Stage 1 so surgery only) I experienced some of the cognitive issues reported as chemo brain, such as poor concentration and difficulty multitasking. This was very unlike me, as I had been a voracious reader prior to diagnosis. As I'd had no chemo I looked to the dementia literature for ideas. About 5 months ago I started learning another language. The difference it's made to my cognitive functioning has been amazing. I've gone from not being able to finish a few sentences in the newspaper to reading academic research papers again. I'm sure that 'chemo' brain will turn out to be a multi faceted phenomenon but I can't help noticing that in the research literature little consideration has been given to the idea that a life threatening diagnosis might trigger PTSD symptoms including cognitive deficits. Now that a separate non-chemo group has been identified as having these symptoms perhaps that will change and research might focus on psychological as well as pharmacological intervention.
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

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3c Dave
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Re: Chemo Brain Help?

Postby 3c Dave » Thu Feb 02, 2017 3:38 pm

ibcaree wrote:I feel your pain. I still have chemo brain 8 years later. Pre-chemo I had no memory issues, great attention to detail and ability to multi-task. Now I'm left blankly staring while in mid conversation searching for the word I want to use. I also feel like I have full on ADD as it takes so much energy to keep my attention anymore. It is embarrassing and scares me to think about how bad my memory will be when I'm elderly. The hardest part is knowing that people think you are an air head or making up excuses when you try to explain. I'd love to get some real help for this as well.

Sewhappy - Interesting article. I didn't have any memory issues prior to chemo though...only after chemo.


You feel my pain alright! I have the same fears! Thanks for the reply!
Stage IIIC diagnosis August 2014
28 sessions of Radiation and Chemo UW Cancer Center November 2014
Sigmoid and full rectum removal January 8th 2015.

PainInTheAss
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Re: Chemo Brain Help?

Postby PainInTheAss » Fri Feb 03, 2017 6:58 am

ozziej wrote:Just wanted to share my experience as it's relevant to this thread. Despite not having any chemo (Stage 1 so surgery only) I experienced some of the cognitive issues reported as chemo brain, such as poor concentration and difficulty multitasking. This was very unlike me, as I had been a voracious reader prior to diagnosis. As I'd had no chemo I looked to the dementia literature for ideas. About 5 months ago I started learning another language. The difference it's made to my cognitive functioning has been amazing. I've gone from not being able to finish a few sentences in the newspaper to reading academic research papers again. I'm sure that 'chemo' brain will turn out to be a multi faceted phenomenon but I can't help noticing that in the research literature little consideration has been given to the idea that a life threatening diagnosis might trigger PTSD symptoms including cognitive deficits. Now that a separate non-chemo group has been identified as having these symptoms perhaps that will change and research might focus on psychological as well as pharmacological intervention.


Took the words right out of my mouth. Studies have shown that an older brain has the same ability to form new neural connections as a younger one, so the way to help your brain is to learn something new. It really does make a difference.Some of them have gotten zapped by treatment, but learning something new can help new connections develop in a different areas and help overall brain function. I'm still not back where I was, but I'm not scared of my own driving anymore even after totaling a car. Learning new things has given me my confidence back, too. I no longer feel stupid, and that helps, too.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
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justin case
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Re: Chemo Brain Help?

Postby justin case » Fri Feb 03, 2017 8:35 pm

Really, after 43 years in my trade, I don't forget how to do what I do, but I am less patient to those that think they know more, and have learned to pay less attention to what they say. In other words, it's no longer my cause to give advice, that will be discarded! I have learned to concentrate on ME, so I don't forget those around ME, who are trying to help .. I know I said ME more than once, so's perhaps if you worry more about you; than what others think, you can find a place where concentration is less a challenge. It's pretty darn easy to blame everything on Cancer, rather than look inside yourself, and change your perspective ! I forget things all the time, I write notes to myself, I'm 61, and deserve to finally make a few mistakes! JMHO
Michael :roll: :roll: :roll:
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
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21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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3c Dave
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Re: Chemo Brain Help?

Postby 3c Dave » Sat Feb 04, 2017 3:44 pm

justin case wrote:Really, after 43 years in my trade, I don't forget how to do what I do, but I am less patient to those that think they know more, and have learned to pay less attention to what they say. In other words, it's no longer my cause to give advice, that will be discarded! I have learned to concentrate on ME, so I don't forget those around ME, who are trying to help .. I know I said ME more than once, so's perhaps if you worry more about you; than what others think, you can find a place where concentration is less a challenge. It's pretty darn easy to blame everything on Cancer, rather than look inside yourself, and change your perspective ! I forget things all the time, I write notes to myself, I'm 61, and deserve to finally make a few mistakes! JMHO
Michael :roll: :roll: :roll:

Thanks for the replies guys. I think (at least I THINK I think...) I understand Justin. I have adapted a bit by doing something I'm not used to doing. I delegate now. I used to take everything upon myself but as a District Manager and Chair of a Committee I now assign responsibilities a LOT more. I am just now seeing some results and I get reports and deliverables for the District I just review and send on to the US Head Office. Funny...the next day I don't remember which ones I sent so NOW I have folders in my drive for "processing" and "sent to USHO". I have found that I forget to move them though. LMAO. It is a real challenge because it all used to come so naturally. I have talked to my wife about it and I get the same stuff I'm reading here...don't blame it on the cancer....work on yourself....take it easy on yourself. Must be good advice I guess....or you're all just misunderstanding the severity and terror it brings to mind in my little reality. :roll:
Hoping "This too shall pass." I am reading that chemobrain can clear up in 2-5 years for most. I am at 2 as of January so....hanging on...praying...and delegating.

Thanks for a place to talk.
Stage IIIC diagnosis August 2014
28 sessions of Radiation and Chemo UW Cancer Center November 2014
Sigmoid and full rectum removal January 8th 2015.

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chrisca
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Re: Chemo Brain Help?

Postby chrisca » Sat Feb 04, 2017 5:14 pm

One other thing: Get your thyroid levels checked. I've encountered several friends who've been through chemo and had multiple symptoms afterward that taken together, indicate thyroid deficiency. When treated, the problems went away. Doctors don't appreciate that chemo can also affect the thyroid. Also check testosterone. Recent studies indicate testosterone can be boosted with morning light therapy. If you feel better in Hawaii than Seattle, that could be a clue.
Male, false negative colonoscopy age 48
DX: 12/2010 rectal cancer age 51
Stage T3N0M0 2 cm from anal verge
neoadjuvant rad/chemo Xeloda
Rectal resection (open surgery) straight anastomosis
Xeloda round 2
ileostomy reversal 11/2011
Successful adhesion X-lap 8/2013
Ongoing LAR syndrome but NED 5 years

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waw4
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Re: Chemo Brain Help?

Postby waw4 » Wed Feb 08, 2017 11:51 pm

Hi Dave,
I can tell you I now start each day with 1 TBL of MCT oil in my cup of coffee and I think it makes all the difference in the world and would highly recommend you try it. I use the NOW MCT oil from Swanson at $16 a quart (64 daily doses) (http://www.swansonvitamins.com/now-food ... -oz-liquid).

If you do some research you'll see there's some rationale behind MCT enhancing brain function and I personally recommend it. Similar concept to "Bullit Proof" coffee you may have heard about. An article I originally found very interesting on the use of MCT oil to improve cognitive functioning can be read at http://www.preparemd.com/conditions/alz ... l-and-mct/

Zero risk, low cost so I suggest you and anyone else suffering from chemo brain give it a shot and I hope it helps you as much as it has helped me.

Regards,
Bill
Bill, 66 yr. old male, m. w/2 grown daughters
Colonoscopy 6/29/10; Dx Stage I or II
Colon Resection 7/15/10; Dx Stage III
CT/PET clear 9/7/10
FOLFOX4 start 9/14/10; end 1/20/11 (9 tx)
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dschreffler
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Re: Chemo Brain Help?

Postby dschreffler » Sat Apr 15, 2017 12:17 pm

Hi,

Thanks for this post! Since 2012 I have been dealing with this issue, and has been very difficult to have Dr's recognize it, family and friends deal with it, and work to understand it.

Short version
• struggling with "chemo brain" since 2011 after neo-adjuctive, and post adjunctive treatment for rectal cancer (physically, all good since 2011!!!)
• Med Dr's others dismiss as old age, normal aging - suggested exercise
• Psychologist: hinted at PTSD, age --suggested set boundaries on what can and can not do, exercise

Disappointed to realize local medical community not aware of means to handle.

My realization is that the problem is that these subjective discussions that are being dismissed, vs having an objective means of measuring pre and post cancer mental state. We do not baseline mental state as we do physical state, and that we should baseline cognitive ability as we would do blood tests, CAT scans, scoping,etc.

I have an appointment with a Dr that specializes in brain injuries, does impairment rating evaluations, and Post-Concussion Assessment and Cognitive Testing (ImPACT). In short, treat this like a brain injury. While this can not tell me how much has changed as nothing to compare with in 2010 (pre cancer), can at least see if getting better or worse over time. Like we do for kids in school sports. Baseline, and then if an injury, can see impact.

Here is the long version:
Symptoms
• Takes me longer to complete non physical tasks
• Recall – specifically when need to produce fact on demand, but even if asked what is your favorite x, struggle
• Difficulty focusing
• Cognitive block – will try to do something and will freeze trying to think what need to do task – confusion(?)
• Verbal communication ( loss for word, can visualize answer, struggle to vocalize) – that spirals into harder to do (like a stutterer - how nervousness increases stuttering)
• Distracted when walk from 1 room to another to get something -Similar at work when doing a task – shifting thru computer applications, jump to new task, not complete one working one. If asked a question while doing something else, at times lose the thought pattern/task working on. Why I do not use cell in car, and ignore questions when doing something.
• Did I mention distraction - this note took me an hour to construct, as I drifted into other thoughts/tasks.

Daily impact is mostly professional - fast paced corporate environment. Job performance suffering – top rate performer now at risk of job loss. Communication and command/control of team and subject matter critical to my work impacted. At risk to lose my job, and medical community can yet able to make case for disability, nor am I sure I would want that.

Background
• Cancer treatment – 2009 diag, 2010 treatment, 2011 done – chemo/rad, surgery, chemo
• Clean – cured – 6 years
• No major long term physical issues – low blood counts (red/whites), some neuropathy in feet, lost muscle tone/ flexibility, weight gain due to less activity.
• Issue that remains and struggling with since return to work has been cognitive issues

Actions to address:
• Discussions with Primary and Oncologists a year after treatment ended, and over course of annual exams
• Cancer support forums
• Shifted to part time work for about a year, returned when felt could handle
• From medical Dr's : “old age”, try exercise
• Psychologist: 2013 – diag was potential PTSD: that I should draw boundaries, accept what you can, try exercise,
• Diet, exercise – focus in 2015/2016 as means to improve cognitive/depression issues. Lost 20 pounds (good!) - have been running 5/10K races and completed ½ marathon
• Physically in best shape of my life, but cognitively feel same as I did as in 2011 thru 2016.

Hope this helps!

Regards,

Dan
DX:T3,Nx,M0 2/5/10 RC 3cm@analverge CEA7.3
Neoadjuntive 2/24-4/5: 28 rad/Xeloda(M-F),5 rnds Oxaliplatin,IVwkly
6/15/10-TAE surgery 10 weeks aft neoadjunctive.
Path clean, CEA1.3
post surgery 12 rnds FOLFOX
NED 1/26/11
http://csn.cancer.org/user/120360


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