chemo brain

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midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

chemo brain

Postby midlifemom » Sat Jun 21, 2014 9:03 pm

So, how long does this chemo brain last? I just finished #9 of Folfox and I'm becoming stupider, more anxious, less able to deal with stress (insurance snafu - they accidentally cancelled our medical insurance - all straight now but I just cried, couldn't handle it like I used to). With this in addition to the fatigue and never want to cook dinner I now feel so useless and I DON'T LIKE IT!!!! Please tell me it gets better soon.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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ConnieSPK
Posts: 144
Joined: Tue May 07, 2013 6:28 pm
Facebook Username: Connie Perkins Kreienheder
Location: Dardenne Prairie, MO

Re: chemo brain

Postby ConnieSPK » Sat Jun 21, 2014 9:42 pm

Hi there,

As a chronic anxiety sufferer with chemo brain....I can sympathize. For most folks, they say that chemo brain gradually goes away...but everyone is different and responds to chemo in varying degrees. However, I found that the chemo brain sort of feeds the anxiety machine which then clouds thinking further and so on, a vicious cycle,.....What I'm saying is that anxiety about your condition may be making chemo brain symptoms feel worse. You might talk to your onc about something for anxiety, if you aren't already on it. I take Xanax.... It isn't habit forming (that I know of) and you don't have to build up or taper down dosage, only take it when things are getting out of control feeling.

Hope this helps,

Connie K.
Dx08@54,StgIV Colon,Liver,Lung, ColonSurg,FOLFOX+Beva
09 LiverSurg
10 FOLFIRI+Beva
11 FOLFOX+Beva,ox reaction
12 Bi-lat LungVATS
13 New mets L lung FOLFIRI+Zaltrap,5FU reaction
14 Return mets L lung SBRT,successful
15 Lung Spots, Irinotecan

ColOrPan
Posts: 378
Joined: Thu Aug 22, 2013 2:15 pm

Re: chemo brain

Postby ColOrPan » Sat Jun 21, 2014 10:21 pm

Hello Midlifemom,

I agree with Connie, stress alone could cause a lot of what you described. My husband is the one on chemo but if our health insurance were to be cancelled while one of us was going through cancer treatments I'd be crying too. :cry: And talking about becoming stupider, half the time I can't finish my sentences and can't find a simple word. I'll be handing my husband a pill and be like: Here is your, huh, your, your, huh ......... huh Celebrex! ...And I am not on chemo. Maybe it's because I've been handling the Xeloda pills! :lol: So with the stress plus the chemo, it's no wonder you don't feel like your usual brilliant and dynamic self. Hopefully that will soon be a thing of the past.
I feel like this a lot of the time -> :shock:
06/2012 DH rare intestinal type Ampullary/duodenal cancer. They extrapolate from colon cancer. FOLFOX 6 been working since Aug 2013. Feb 2014 once a month folfox as maintenance.
May 2014 Folfiri - fail
Starting off-label JAKAFI 08/25/14

manders
Posts: 53
Joined: Sat Jul 13, 2013 7:32 pm
Location: Pacific Northwest

Re: chemo brain

Postby manders » Sat Jun 21, 2014 10:30 pm

For me, chemo brain improved a lot after I finished chemo. It is no longer something I notice on a daily basis. Though, I do think it has persisted a bit. I am usually very good at mental math but recently while I was shopping I was really struggling with figuring out the sale price of an item in my head while also trying to quickly get my shopping done with a impatient child. I think not being able to do the simple math was a bit anxiety producing for me as I was really surprised I was struggling with such a simple task.

Prior to starting chemo, my husband was most concerned (side effect wise) about the chemo brain, since among other things, he married me for my quick wit and sharp mind. He says he is no longer worried so it isn't noticeable to him anymore. I still worry that it will come up again in my professional life if I start working again (I am a stay at home mom now).

Overall, definitely improved after chemo was done!
Mom to 2 (2008 and 2018)
Diagnosed at 34, 7/9/2013
Sigmoid colon resection 7/24/2013; Stage 3b; T3 N2a; 4/14 lymph nodes
Folfox 8/28/2013 - 2/7/2014

Jachut
Posts: 1137
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

Re: chemo brain

Postby Jachut » Sun Jun 22, 2014 3:45 am

Scarily if you google there's a lot of talk out there about chemo, particularly 5FU causing long term damage to the central nervous system in the form of ms like plaques- its anecdotal and Im sure my onc would scoff but I personally never recovered fully, although its very mild, just memory stuff and the inability to multitask. However I have to have an MRI next week due to other multiple sclerosis like symptoms - vision issues specifically. So, who knows?

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: chemo brain

Postby midlifemom » Sun Jun 22, 2014 8:10 pm

Thanks to all for their responses.
Life is also more difficult when I can't sleep so my doc just prescribed me Lunesta. Taking it tonight for first time, hopefully it will help.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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ConnieSPK
Posts: 144
Joined: Tue May 07, 2013 6:28 pm
Facebook Username: Connie Perkins Kreienheder
Location: Dardenne Prairie, MO

Re: chemo brain

Postby ConnieSPK » Sun Jun 22, 2014 8:27 pm

Hi Jachut,

I can no longer take 5FU, even for maintenance because during my last course of chemo, I started manifesting MS like symptoms, like drop foot, balance issues (I grew up watching my Dad hang onto furniture and bounce off walls due to MS)....so, yes, it can have MS-like effects. This reaction is listed as "rare" in the 5FU literature, but different chemo nurses I've spoken to said it really isn't that uncommon.

Connie K.
Dx08@54,StgIV Colon,Liver,Lung, ColonSurg,FOLFOX+Beva
09 LiverSurg
10 FOLFIRI+Beva
11 FOLFOX+Beva,ox reaction
12 Bi-lat LungVATS
13 New mets L lung FOLFIRI+Zaltrap,5FU reaction
14 Return mets L lung SBRT,successful
15 Lung Spots, Irinotecan

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tchan8888
Posts: 208
Joined: Mon Mar 25, 2013 8:41 pm
Location: San Francisco Bay Area

Re: chemo brain

Postby tchan8888 » Sun Jun 22, 2014 9:53 pm

I am on FOLFIRI. My infusion day is on Thursday and the Chemo Brain normally lasts until Monday or Tuesday. This last infusion (my 22nd treatment), I skipped the Ativan which helped me avoid the fogginess. The nauseous has been worse this time around.

Blessings,

Tom
Tom, 49 now
12/12 Right Hemicolectomy 2X (29 days in hospital)
12/12 Stage IV: multiple distant LN; no organs
20X: FOLFIRI (stopped working)
8X: 5FU
8X: FOLFOX and Avastin
2016: Clinical trial pembrozilumab MSI high

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: chemo brain

Postby KWT » Sun Jun 22, 2014 9:56 pm

It would be nice if we could just forget about the friggin cancer part :D

That would be some good chemo brain :shock:

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Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: chemo brain

Postby Bev G » Sun Jun 22, 2014 11:35 pm

I have had pretty significant chemo-brain since I stopped the 5FU more than 3 years ago. My onc didn't really buy into it, but I had no doubts at all (unless it does turn out that I have MS, I also have a number of those symptoms) After the Rochester study came out I think most of the oncs were finally willing to take it a little more seriously. I have an appointment in mid-July with a neuro-oncologist at Dartmouth who is working on chemobrain. Well, actually, I had the appointment last week but missed it by a day---wrote the wrong day down on my calendar (thanks, chemo-brain). I felt awful because it was a 990 minute appointment with him. I'm pretty sure he wasn't too pleased either! I let you guys know what he says.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: chemo brain

Postby midlifemom » Mon Jun 23, 2014 4:23 pm

Bev, please do let us know how it goes with neuro we Ocala.
Kennyt, thanks for making me laugh, the highlight of my day so far!
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: chemo brain

Postby KWT » Mon Jun 23, 2014 5:58 pm

MLM, I'm here all week :wink:

On a serious note, I know how you feel and hope things get better.

Cured
Posts: 581
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: chemo brain

Postby Cured » Mon Jun 23, 2014 9:22 pm

Midlifemom, Get as much sunshine and Fresh air as you can and take some walks.

Mine went away. Although my wife accuses me of some mind dumbing - but 39 years of marriage will do that to you. :)
Anyway, she forgets as much as I do and she never did chemo.
As your body recovers from all of the effects you should recover from the chemo brain. It happens slowly, so there is no pronounced date of recovery.

Best wishes as you complete your treatments - to come out whole on the other side of the "chemo tunnel".
7-18 Stg 4
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radian+5fu Pre-Surg
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing brain Remove
Met to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3 1.8, 2.3,1.7 then up:32
12rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumr gth =Folfiri
Radiation 7-22

Cathie
Posts: 78
Joined: Fri Mar 28, 2014 12:09 pm

Re: chemo brain

Postby Cathie » Tue Jun 24, 2014 11:19 am

It's been since the summer of 2003 that I had my last chemo. In 2003 I was 59, I'm 70 now and I blame every thing on "chemo brain."

Cathie
Dx'd colo rectal cancer Oct 2002
radiation chemo November December 2002
Surgery Mar 2003 which was a temp ileo
Summer of 2003 more chemo
Ileo reversed Mar 2004
Cancer free since then

nkoske
Posts: 442
Joined: Fri Feb 22, 2013 2:00 pm
Location: California

Re: chemo brain

Postby nkoske » Tue Jun 24, 2014 11:28 am

I still don't feel as sharp and often find myself searching for words a nearly a year post chemo. But, I get on fine...not sure people notice...could all be in my head.
Nick, DX @ age 34, IIIB Rectal Cancer 10/2012
ChemoRad IMRT 11/2012
Laparoscopic LAR 1/2013 (No Ileo)
Post Surgery Path IIIB (2/15 LN)
Chemo 2/2013 (XelOx)
Currently NED, Graduated from Med Onc 10/2017


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