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Topic: Chemo Brain

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  • Posted on: Nov 3, 2009 09:20 am
AL
Joined: Oct 2009
Posts: 12
Chaparrita wrote:

I am four months into remission from IBC and am experiencing extensive chemo brain.  No short term memory, complete lack of attention and focus. Inability to concentrate if there is chaos going on around me.  I can only do and think about one thing at a time.  Sometimes I just want to scream out, shut up, turn that darn TV down among other things.I "lose" words if I try to carry on a conversation, I feel like my brain needs to be defragged so it can find the files quicker.  I carry two books in my purse...one a calendar and the other a notebook and I must write everything down.  The things I need to do and the things I have done or I will forget I have done them.  Is anyone out there experiencing this problem???


Diagnosis: 7/21/2008, IBC, 6cm+, Stage IV, Grade 3, mets, HER2+
Posts 1 - 20 (20 total)
eastender
Skagit Valley, WA
Joined: Jun 2009
Posts: 16
Nov 8, 2009 10:18 am eastender wrote:

Ah yes chemo brain.  I am right there with you!  I hate it with a passion.  I am a medical receptionist during the day and a mom after hours...lol  I get home and like you want to say turn off the *&^*& TV, the head it not clear, I loose words during conversations and forget simple jobs at work..I am at a loss of what to do!

This is a very special club and not everyone is allowed to join...Lumpectomy June 09; Chemo July-Sept 09; Revision of margins October 09; Rads October 09
Diagnosis: 4/29/2009, IDC, 6cm+, Stage IIIa, Grade 2, 0/5 nodes, ER+/PR+, HER2-
simvog
NJ
Joined: Oct 2008
Posts: 355
Nov 8, 2009 10:37 pm simvog wrote: Same here. I finished chemo at the end of May and I am still having problems. Unfortunately for me I got Lyme disease in August so it just added extreme fatigue. I hope my brain will come back soon. Laughing
L-Total Mastectomy-Oct 08, 4xFAC+12xTaxol, mosaic tumor weak ER/PR +, profi R mastectomy Sept 09, no recon
Diagnosis: 10/10/2008, IDC, 4cm, Stage IIa, Grade 3, 0/8 nodes, HER2-
smithlme
Fort Bragg, CA
Joined: Dec 2007
Posts: 909
Nov 8, 2009 11:23 pm smithlme wrote:

I ended chemo in August of 2007 and I still have chemo brain. I am in a study at Stanford on the emotional and cognitive effects of chemo on the brain. It was a 4 hour appointment with a brain MRI at the end. Since there wasn't any testing prior to my diagnosis and chemo, it's hard to judge, on paper, what the true effects are. I'm now at the part where I do "games" on my computer to see how my brain learns new things. I'm hoping my participation will help someone, somewhere...

Linda

Dx 3/31/08, DCIS, ER+/PR- BRCA2+...Life is a series of every day miracles...
Diagnosis: 3/28/2007, IDC, 2cm, Stage II, Grade 3, 0/9 nodes, ER-/PR-, HER2-
youlooklike…
near Houston, TX
Joined: Feb 2008
Posts: 237
Nov 8, 2009 11:28 pm, edited Nov 8, 2009 11:34 PM by youlooklikeyouneedabeergirl youlooklikeyouneedabeergirl wrote:

Yes! I also carry a pocket calendar and notebook all the time just like you. I also carry a notebook for my handicapped son because I try to help him keep up with appointments and things. I am hoping it will get better...maybe some day. Oh, I need to add that it has been 15 months since the end of my chemo tx. Also, after taking Armour Thyroid for many years, I had to switch to a synthetic substitute. It doesn't work nearly as well and that affects the thinking process also.

Beergirl
Diagnosis: 2/11/2008, IDC, <1cm, Stage I, Grade 1, 0/10 nodes, ER+/PR+, HER2-
Estepp
Joined: Jun 2008
Posts: 3,796
Nov 8, 2009 11:37 pm Estepp wrote:

Mine is terrible.  I pray it goes away. My Onco. does not think it is chemo brain. ( I doubt he even believes in it) He says... when you are thrown into menopause... and all estrogen is gone... that causes the brain/memory issues...

We are the Ta Ta Sisterhood! Her2+ BC is what I had.... and yes sisters.. I had lymph node involvment... DX 6/25/08 www.estepps.blogspot.com
lbrewer
Joined: Dec 2008
Posts: 148
Nov 9, 2009 08:14 am lbrewer wrote:

It is areal condition, protected by the Americans with Disabiliies Act (ADA).  Brain scans actually show changes in the affected.  Some doctors have found stimulants like Ritalin help.
eastender
Skagit Valley, WA
Joined: Jun 2009
Posts: 16
Nov 10, 2009 08:18 am eastender wrote:

Ritalin - that was good to see that post.  I have just had my PCP write an RX for me.  It is a low dose I will give it a couple of weeks and I will let everyone know.

This is a very special club and not everyone is allowed to join...Lumpectomy June 09; Chemo July-Sept 09; Revision of margins October 09; Rads October 09
Diagnosis: 4/29/2009, IDC, 6cm+, Stage IIIa, Grade 2, 0/5 nodes, ER+/PR+, HER2-
Chaparrita
AL
Joined: Oct 2009
Posts: 12
Nov 14, 2009 02:18 am Chaparrita wrote:

I went crazy trying to find things to stimulate my brain, Sudoku, Lumosity web site and so on.  But the more I read the more I am finding out that chemo brain is actually considered "brain damage" and that the frontal lobe of our brain is smaller after chemo.  Not such heartening news, I know.  I tried to explain this to my doctor and beings he sees cancer patients all day you think he would understand, no, he just put me on Elavil for depression, I am NOT depressed.  However I have found that compensating for my chemo brain helps, explaining to my family that I can only deal with one thing at a time and writing every single thing down helped me to eliminate the some of the confusion and chaos in my life.

Good luck, Be Blessed


Diagnosis: 7/21/2008, IBC, 6cm+, Stage IV, Grade 3, mets, HER2+
Chaparrita
AL
Joined: Oct 2009
Posts: 12
Nov 14, 2009 02:23 am Chaparrita wrote:

Thank you so much for your reply.  If only I can get my cancer doctor to prescribe it for me.  I dont really have a General Practitioner Doctor, I had no insurance when I got cancer and had not had insurance for 11 years, so I didnt see anyone.  I just need something to help "defrag" my brain so it can find my files faster  Wink

Once again, thank you for being there

Be Blessed


Diagnosis: 7/21/2008, IBC, 6cm+, Stage IV, Grade 3, mets, HER2+
Chaparrita
AL
Joined: Oct 2009
Posts: 12
Nov 14, 2009 02:30 am Chaparrita wrote:

Why do these doctors not believe us???  It does frustrate me thatI can't get them to acknowledge that I have chemo brain.  I have a plan....  to take a copy of the (ooops lost the word)  ........symposium on this web site and to print ya'lls comments about Ritalin and such and then to take these to my cancer doctor, kind a like, proof. 


Diagnosis: 7/21/2008, IBC, 6cm+, Stage IV, Grade 3, mets, HER2+
cmsreece
Pell City, AL
Joined: Nov 2009
Posts: 1
Nov 17, 2009 10:07 pm cmsreece wrote:

Chaparrita, I understand your frustration.  My oncologist just acts like its no big deal.  Thankfully, I have a psychiatrist who listens and believes me.  I take Adderral for ADD and it helps with the chemo brain a little but I still feel like I'm scatterbrained, I forget a lot of things, I can't think of words or names all the time.  I even had to resign my job because it required so much multitasking.  I finished chemo in Nov. of 2007 and I'm still coping with it.  I live in AL also if you'd like to swap numbers or something.  I need support.  I hope you see this.
cookiegal
NY
Joined: Sep 2009
Posts: 326
Nov 19, 2009 07:10 pm, edited Nov 19, 2009 07:14 PM by cookiegal cookiegal wrote:

Ok I will admit this is the most terrifying thread for me. I already have ADD.

I have an oncotype score of 22. I am so worried with chemo my ADD will get worse and leave me unable to work.

I have some discretion on whether I do chemo, and when I read this it makes me think it may be a mistake. It would get me a 6-7 percent benefit interms of distant recurrance.

My onc says I am already used to compensating, so I will be better able to cope. I thought I had made peace with my decision to do the chemo, but reading this, I really don't know.

I don't know. This really scares me.

cookiegal
NY
Joined: Sep 2009
Posts: 326
Nov 19, 2009 07:12 pm cookiegal wrote:

So here is my question...at what point in tx's did you realize the chemo brain was severe. For example, if I have one or two tx's will I have a sense that there is a problem soon enought to stop?
Chaparrita
AL
Joined: Oct 2009
Posts: 12
Nov 20, 2009 01:43 am Chaparrita wrote:

Hey cookiegal, I think I was so out of it during chemo that I didnt notice the chemo brain.  Its when I stopped chemo and went into remission that I noticed it.  While in chemo I thought it was the side effects of chemo.  I really began to notice it when the fog cleared from the weekly chemo.  I dont mean to scare you, I am just looking for answers from others who have it.  I am beginning to think that a low dose of Ritalin may help or so I have read on this web site.  Good luck and God Bless


Diagnosis: 7/21/2008, IBC, 6cm+, Stage IV, Grade 3, mets, HER2+
Chaparrita
AL
Joined: Oct 2009
Posts: 12
Nov 20, 2009 01:49 am Chaparrita wrote:

cmsreece,

 Oh, I thank the Lord above someone else has this and I can talk to you about it cause no one understands what it is like unless they have it.  As I said my onc just acts like I am depressed, I say "huh" no way.  I am not sure what to do to get the point across to him and this is frustrating me so much.  I see you are in Pell City, I am in Alabaster, quite a ways away from you.  I'm not quite sure how to do it but I will try to e mail you, OK?

May you be Blessed Chaparrita


Diagnosis: 7/21/2008, IBC, 6cm+, Stage IV, Grade 3, mets, HER2+
Chaparrita
AL
Joined: Oct 2009
Posts: 12
Nov 20, 2009 02:03 am Chaparrita wrote:

Thank you so much, everyone who replies to my post on chemo brain, I appreciate your time and thoughfulness.


Diagnosis: 7/21/2008, IBC, 6cm+, Stage IV, Grade 3, mets, HER2+
cookiegal
NY
Joined: Sep 2009
Posts: 326
Nov 20, 2009 04:38 pm, edited Nov 20, 2009 07:25 PM by cookiegal cookiegal wrote:

Dont worry, you didn't scare me, was already scared about this.

I like Concerta better than Ritalin. It works longer. I take 2+36 mg.

There is no harm in trying, if you do not need it , it will have no effect. If it works, you needed it. There is a tendency to underdose adults, I was on too low a dose for a long time.

Since Chemo is still elective for me, I really wonder if it's the right choice.

My cancer councelor thinks the CMF(which I will likely have) may cause less damage than the newer drugs, so I am keeping my fingers crossed and praying on this.

UPDATE...so I spent the day researching this. I think there is one report that says if you have a problem before chemo you may be more likely to have long lasting or severe chemo brain.

I guess the good news is that my hospital has a phd researcher who specialises in the cognative impact of breast cancer treatment. I called and left a message saying that I really want to meet with him before I see oncologist on Tuesday, so keep your fingers crossed for me!

here is a link

Microsoft PowerPoint - Ahles-Survivors Conference 6-17a-Ahles
navygirl
Bethesda, md
Joined: Jan 2009
Posts: 411
Nov 20, 2009 07:16 pm navygirl wrote:

I find it very frustrating that I am not the person I was before chemo. I used to be able to keep 5 different projects running at the same time, recall things most would have to write down, concentrate no matter what else was going on around me. It's just not so anymore. I have to work much slower, make lists, check and recheck myself -only to find I still make stupid mistakes -which is very out of character for me. I hate chemo brain. I hate my chemo body just as much. I realize with an OncoDX score of 49 I had no choice but to do chemo, I just wish once we were done with treatment that the treatment would be done with us!!!

life is short, play hard
Mother4
Joined: Nov 2009
Posts: 1
Nov 20, 2009 07:32 pm Mother4 wrote:

I'm so frustrated, 7 rounds of chemo done one more to go.  My diagnosis is serious but IM so fed up with all of the side effects. When I say I have chemo brain, my husband just tells me your being silly its nothing it will go away. I guess I have been fighting the battle so hard I haven't had time to be angry and now all of sudden I'm mad as hell at all that my body has gone through and all that I still have to face! Radiation is the next step in "My Adventure" and Im tired, my body and mind are wrecked- everyone is so excited for me that chemo is almost over and I feel like this adventure will never end.


Diagnosis: 6/8/2009, IDC, 3cm, Stage IIIa, Grade 3, 7/24 nodes, mets, ER+/PR+, HER2+
navygirl
Bethesda, md
Joined: Jan 2009
Posts: 411
4 hours ago navygirl wrote:

mother, I know it's hard...especially when you get to the point where you wonder if you have the strength to see it through. I wish your husband "got" it...but unfortunately, very few people who haven't been there can comprehend the depths of wear and tear and fatigue that comes over us. I barely made it through chemo with my energy and will power in tact, I can only imagine how it must be to have radiation as the next step. I have no magic potion to tell you of that will give you strength enough to pull you through. All I can offer is sympathy and prayers that the road is not as long as it seems at this moment. ((((hugs)))) 

life is short, play hard

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