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Old 11-20-2006, 12:14 PM   #1
kat in the delta
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Red face Who has chemobrain and how does it affect you and When did it start ? has it ended??

I have had alot of problems with organizing, just getting ready to get out of the house...so bad that my husband now refuses to take me out to eat or to a ballgame. I just cannot get myself together..I feel like I was alittle bit like this before the cancer,,but recently It has gotten completely out of control...I lose alot of important things..I read 1 article on this at a site I will post when I find it again ....I really need some input help and advice ...please help me, some of you....kat in the delta
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Old 11-20-2006, 12:23 PM   #2
kat in the delta
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Post kat in the delta

here is the article

http: www.apa.org/monitor/apr05/chemobrain.html

I hope it is correct...I could not even remember how to get back to the her2 site and thread starter and how to put this on this site except to hit the GO Back marker....THAT'S BAD !!!
HELP !!!!!!
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Old 11-21-2006, 06:12 PM   #3
Montana
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Kat,

I couldn't organize anything or function very well after chemo. We have a business and I just couldn't concentrate very well and left most management decisions up to my husband and daughter in law. I think it took about a year after chemo (dose dense A/C) before I was pretty much my old self. I kept doing crossword puzzles as I heard they were good for the brain!

It WILL get better!
__________________
Diag. Oct. 2004 age 54 left breast
Stage 1 grade 3; 6mm IDC; unknown amount of DCIS
with comedo necrosis; node neg.
Nottingham Grade 7/9
ER 91% PR 62%; Her2 3.6 by ICH; KI-67 35%

Nov 2004 Lumpectomy; SNB failed so had
full axillary clearance;
Dec 2004 2nd lumpy for clean DCIS margins.

Jan/Feb 2005 4 A/C dose dense;
33 rads finished 6/2005;
Began 5 years Arimidex in 6/2005
No Herceptin
9/2007 Quit Arimidex due to severe side effects.
NED
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Old 11-21-2006, 07:10 PM   #4
kat in the delta
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Thumbs down kat in the delta

In one article I read that some patients were given the med. Ritalin, to help them focus. Anyone get meds that helped along with other therapies for CHEMOBRAIN ??? I have done the crosswords and have highlighted things and have 5 notebooks with info. somewhere around------ info i have written down to help me remember....I am having a rough time with this.....kat in the delta RSVP
I went to a neurologist yesterday and he gave me some RX to make me slower ???? and less manic {????}--but he only saw me for 10 min....I was trying to get it all in--- so I guess he thought I was Hyper.!!!...Going to him( 15 min away from my house) was the only thing I did all day --got home at 6 pm and slept til the next morning---I am definitely NOT HYPER or manic, but need to be....I did NOT take the RX HE prescribed--thank goodness.....kat

Last edited by kat in the delta; 11-21-2006 at 07:19 PM.. Reason: left out
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Old 11-21-2006, 08:20 PM   #5
Montana
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Kat, I don't think there is much you can do....just be patient...it will get better. Try to take it a little easier on yourself. Writing notes of things to do helped me.
__________________
Diag. Oct. 2004 age 54 left breast
Stage 1 grade 3; 6mm IDC; unknown amount of DCIS
with comedo necrosis; node neg.
Nottingham Grade 7/9
ER 91% PR 62%; Her2 3.6 by ICH; KI-67 35%

Nov 2004 Lumpectomy; SNB failed so had
full axillary clearance;
Dec 2004 2nd lumpy for clean DCIS margins.

Jan/Feb 2005 4 A/C dose dense;
33 rads finished 6/2005;
Began 5 years Arimidex in 6/2005
No Herceptin
9/2007 Quit Arimidex due to severe side effects.
NED
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Old 11-23-2006, 05:08 PM   #6
kat in the delta
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My Onc sent me to a neurologist ==noone else to see in this small town/city......He gave me a prescript. for some type of seizure meds also used for Manic-Depressive people. He gave me 4 samples and a prescription.....but after reading a little about it....I thought is was exactly the opposite of what I needed...It would cause me to be more drowsy and take off any High/Manic feelings ---which are not many now..I am more depressed than MANIC....I need to see a neuropsychologist, not a neurologist who is a foreigner...He asked me ?'s and that was the only thing I did all day and I went to sleep when I got home around 6pm until the next day without taking his RX...
I have tried so hard....I have used Highlighters, marked calendars.....I have so many Notes to myself tapes to mirrors, the refrig. and even E-Mailed myself on the computer and on my cell phone.....I am pathetic. ....My house is always in a kaotic state which makes matters worse....I cannot get my husband or sons to lift a finger....I cooked for Thanksgiving, but my mother came in with another 8 dishes of Food....I just cannot even walk back into the Kitchen at this point....I missed all the sunshine today which really depresses me...Sorry about all the complaining, but I need to get some of this out of my system...Has anyone else here had problems with organizing and focusing on ONE thing at a time ?? Now, my youngest son-just said his newgirlfriend form Texas was driving here and would be HERE tomorrow late afternoon....I just think it is umpossible. I may just leave and go ???for the whole weekend....
I did see where there will be a teleconference on the Breast Cancer treatments such as memory lost and more on Nov. 29th thru www.cancercare.org.....I will have to e-mail me or can someone remind me to watch it ???
Hopefully there will be some solutions....kat in the delta {the home of the blues,,for sure)






w
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Old 11-24-2006, 10:33 AM   #7
Christine MH-UK
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I found David Allen's Getting Things Done to be helpful

I recovered from chemo brain pretty well, but got a nasty case of what I call "herceptin brain," although the phenomenon has not yet been recognized by medical science.

The beauty of the David Allen system is that it is based on writing everything down, so it is perfectly suited to people who can't keep anything in their heads. Basically, you go through all your stuff and do anything that you run across that you can do in two minutes or less then and there. You chuck out anything that is not useful. You file stuff if it is necessary reference or put it into a 'someday/maybe' pile if it is for some other time. Anything that you need to act on now you note the very next step that you need to take.

If you buy the book, you might just want to skip to the diagram, since that basically explains it.

It takes a while to go through the whole system, but it really did help me get my organization back.
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Old 11-24-2006, 12:11 PM   #8
kat in the delta
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Red face kat in the delta(the home of the blues)

thanks christine,
you think I could find the book on Amazon's.com....Is it really worth it ?? I have just about given UP --my husband and all my sons,( except for my 1 son-about to graduate from Law School in the Spring) treat me terribly. My husband was off today and said he was going to Oxford to eat lunch and visit his brother who was flying in from Dallas,TX & will be attending the Ole Miss football game tomorrow(sat.) We went to the first 2 games, but ,my husband said that we cannot go anymore--at least he won't let me go because he says I am too late &slow and HE wants to be there 4 hrs. before the game starts to socialize and get a good parking space....I haven't even seen the sunshine in days in this house of disaster......I am going out in a min. to walk my largest dog make-up or NOT......I need to get out of this town !!!! my son's girlfriend just told me She had a ticket, but had to work...maybe I should just make plans to leave without him.....He is MEAN to me !! Did you ever go to a neuropsychologist or anyone for help ?? I received some info on chemobrain from www.cancercare.org and one article said that Chemobrain is WORSE after Adjuvant therapy--herceptin. What to do ---I just do not know ....my youngest son said his girlfriend from San Antonio was coming to this wretched messy house by late afternoon-early night........I cannot clean this up......
I will look for that book but I think the Ritalin or simailar prescribe meds. as one of the articles had --would help me get up and FOCUS on ONE thing......, I am getting detressed, but YOU have helped me feel less a loner in THIS...do you have children?? Mine are 26-thinks he knows all, 25-will help some, thank God, and 23 who has been a constant student ...and has met this tatooed noseringed, lipringed opera major thru the internet!! my husband whoshould have MORE since, thought it was funny(?)--, not me. My husband stays on the internet every nite for at least 3-5 hrs.....I have seen a microphone and a view thing...Once I hid the mouse and he EXPLODED !!!!!! I do not trust him............................rsvp on any
I need that old book..Women are from V .......Men...mars....kat in the lonely blue delta.
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Old 11-24-2006, 04:45 PM   #9
Christine MH-UK
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It might work

It sounds to me like you might have too many reminders all over the place. It might work better to just have one big list of next actions you need to do and then you will just need to make sure that you have that. Well, that and a calendar for all the things you need to do on a specific day.

David Allen's point is that if you are keeping lots of stuff in your mind then you are going to have difficulty keeping track of it all and that causes stress and difficulty focussing on any one thing. That's why he recommends doing all of the two-minute things first, so you won't have so many little things to keep track of. I read the book when my herceptin brain was really bad and I would recommend starting off by looking at what he calls the "workflow diagram," which is all about deciding how to get things done. That one diagram covers alot of text.

I find that checklists can be good. I also try to have things prepared the night before and visualise what I will do that day to make sure I have everything. Before cancer, I was superorganized, but it has been a real struggle to get my act back in order. I'm still not there.

If it's a messy house, the best thing is to take one room at a time, starting with the one that is stressing you out the most.

I have a four year old and a fairly demanding job. After having to pay for four months of my year of herceptin, I am much more wary of becoming financially dependent on the UK national health service for expensive drugs, so I am balancing the two but it would be difficult for anybody. I also went back to work after my radiotherapy way too early, largely because I had this gut feeling that to have a reasonable shot of surviving this disease I was going to need some treatment that would be available somewhere, but not on the health service, and knew I would need money for it.

I have tried to interest my oncologist in herceptin brain, but he seems to have gone cold on looking into it. Now that I have finished herceptin, my thinking seems to be improving. Actually, just getting control of my insomnia was helpful. I did feel a bit wired when I was on herceptin: tired, but unable to sleep. Do you suffer from insomnia? Occasionally I still take a one-off trazadone and that helps. I seem to get a bout of insomnia every three weeks when my herceptin would have been due and I finished nearly two months ago.

Best of luck,

Christine
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Old 11-24-2006, 08:02 PM   #10
Bev
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Hi Kat, Have you had a brain MRI to rule out mets? If that's clear, maybe antidepressants would work.

If I were you though, I think I'd go stay at Mom's while the rest of the clan hires a maid in your absence. Even if you don't go on vacation, having a maid come 3 or 4 times may help get things more ordered. If the house is clean, your mind may be able to focus on other things. Good luck, BB
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Old 11-25-2006, 03:37 AM   #11
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Kat

Sounds like you are having difficult times. I hope things improve.

If you have not looked at the omega three six posts you might like to.

Fats play a big part in brain function.

A number of trials suggest that in essence improving the omega three six balance may help in a number of neurological conditions.

I have previosuly posted concerns (unanswered) as to what impacts various drugs have on the fat pathways. If any of the drugs do shut down the ability of the body to make long chain fats the only way to get them is through diet. Fish oil / oily fish is probably the best source.

RB



Good books include
Smart Fats A Schmidt (of the newer version)
The Way to Beat Depression Dr Puri
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Old 11-25-2006, 09:26 AM   #12
kat in the delta
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Thumbs down kat in the delta

I think nobody knows the effects of Herceptin, and I don't know if anyone is researching it. Maybe we can start one on this site since this is the only site I know for Her2 people only.........I will post another new link to take a poll.
I also just had my 2nd dose of Zometa after the one yr. of Herceptin had ended this last August"06. I hope I will remember to complain enough to run a PET scan. Will that get my BRAIN, too?? anyone know ???
I haven't looked at the side effects of THAT drug, a biophosphamate for building my bone density. My Onc. gave it to me because I was complaining of my bones aching and my bone density test showed my hips were a -2.5=(if one part is osteoporosis then you are considered having Osteop)
Thanksgiving for me was a nightmare....I tried to make it simple....salad, meat, veg., fruit....Then my dear mother brought about 8-10 more dishes ....everyone left, and all I could do was STARE at the mess and leftovers...not able to organize ANYTHING even to put the food into my refrig.!! Then, a new maid did not show up the next day as planned, & hasn't appeared yet ....Another horror yesterday afternoon occurred when my youngest son in college told me he had invited a new girlfriend who was already on her way here from Austin, TX.....and everything in chaos and dogs had used rr on floor .........I left the house for about 2 hours before she arrived...I just could not take it !! I met her then, he took her to Oxford, MS for the rest of the weekend.... He did put JUNK in containers and piled them in one of the messier 2 bedrooms where I sleep--no sheets....Will things get better ?? Everyone just gets Mad at ME...I better look for that book now...................kat in the MS delta

Last edited by kat in the delta; 11-25-2006 at 09:34 AM.. Reason: left out
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Old 11-25-2006, 03:07 PM   #13
R.B.
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Omega three it is suggested can also improve bone density.

See Greek Diet post.

I wish for you that it all starts getting better soon.

RB
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Old 11-25-2006, 08:45 PM   #14
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Kat, please see your onc or somebody. I'm worried as you are normally upbeat. There has to be something they can do. You have to tell them how you are feeling first so they can make a reccomendation. I may do the bulk of Tday dinner, but there is no reason why hubby and kids can't help out. The group endeavor is what makes it pleasurable. No one should have to feel distraught. It's your right to find a way to fix this. My kids are still kind of lazy, but my husband washes dishes which is only fair.

I've had a cleaning lady come twice and it's help me focus on things I need to throw out. Maybe you also need to lower your cleanliness standards. It might you feel better. I have and the earth still revolves around the sun. I wouldn't eat off my floor though.

Recently I read an article that suggested chemo changes how your brain functions. Use what's left to fix your problems and not clean the house. The extent of my problems is that I walk into rooms not knowing why I went there. But I figure it out eventually. I never was the sharpest tool in the shed, so being a hair duller hasn't mattered.

I just think you have to do something, get the ball rolling, as you are not happy with the status quo.
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Old 11-26-2006, 03:12 PM   #15
kat in the delta
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Thumbs down Kat in the delta

I did tell my Onc...when I told him my husband would not take me anywhere or let me sleep with him, HE immediately made me an apt with the only neurologist.
I went to the apt--45min. late,...I was trying to get a life history into 5 min....so he MUST have thought I was Manic.....so he gave me this med. to cut off the manic of a" bipolar disorder", which would turn me into Rip Van (?)....I have read some recent transcripts from telconferences and other med.articles---sent Them to my sister who printed copies for me-- One was a teleconference with a Dr. Glasper... know him?.....Anyway, he said to first check to see if you are anemic( I am not). Then he said he gives patients...a similar RX like Ritalin to help them focus on one thing at a time....
Today was distrastrous...couldn't find receipts, coupons to go with sister and mother out of town to shop & take things back...got very frustrated & upset with my state of confusion..... I couldn't go.
My sis. called back and said I just HAD to show that neuro. DR.or another MD. the articles she had printed out about chemobrain and the after effects of some treatments. She thinks I should try Ritalin or similar RX.
Then, my sons came in telling me to act normal and stop the writing-myself notes bit, saying I was finished with my treatments,& nothing was wrong with me now, and that I did NOT need to e-mail or be in any Cancer type Support group on the internet or anywhere because I did not have cancer, anymore ! The youngest,23, said he was breaking the computer...then they left.. They do not see the point of having a support group...even the one finishing Law School who is usually more sympathetic told me that I only I need to have a blood test every now and then...( My Onc does the CA 27 &29)
I could go on.. MY QUESTION TO ALL OF YOU IS:
HOW
can my sons understand that I need a support group, and the YOU help me ??? kat



Last edited by kat in the delta; 11-26-2006 at 06:32 PM.. Reason: left out
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Old 11-29-2006, 11:03 AM   #16
Merridith
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Wow Kat:

I've been reading your posting string. You are having quite a bad time of it. I can't believe that your husband would refuse to take you to a restaurant or out to a ball game with him.....Especially when that is the type of thing that would be good for you. That's nasty.

It also sounds like you are the chief cook and bottle washer. Are you in the position to temporarily hire help? That might assist you. Even some 13-14 year old kid looking for baby-sitting equivalent money might be willing to drop by and do things for you like dishes, washroom & ironing after school.

I also had TERRIBLE chemo brain. It was so bad that at one point after I loaded my groceries into the car after shopping at a store that I had shopped at for years, I actually couldn't figure out where to drive to get home.

I also did the calendar, post-it note thing. I kept a notebook beside the phone and jotted quick notes on who phoned, when, and a synopsis of the conversation while we were talking so that I could track the conversation later. I didn't want to keep repeating myself like Granny!

The best method for coping I found was to keep a daily diary - not one to talk about what I felt, but a work journal that recorded who I spoke to, decisions, appointments etc. It was ONE central location for everything. Someone asked me out? I checked the journal. Should we buy the VCR? I checked the journal for a notation. Going somewhere? After the decision to go somewhere had been made, over the next few hours I would make a list of things to do IN the journal.Then when it came time, I would systematically do each thing on the list, ticking as I went. I refused to be responsible for things like hotel keys or anything that required tracking. I actually would state that I had chemo-brain and wouldn't be responsible for any outcome.

And to answer your worst fears......yes it does go away. After you stop chemo, you'll notice a significant improvement after 3-4 months. But the full effects take at least a year (if not more) to fade completely.

Take care!
Merridith
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Old 11-29-2006, 11:20 AM   #17
kat in the delta
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Exclamation kat in the delta(the home of the blues)

If possible, go to www.cancercare.org There is a teleconference from 12:30pmCental to 1:30pm central-- register and then call or try to get in anyway by calling:
1-800-521-5401 Side effects of Chemo: includes chemobrain, lymphdem..neuropathy and more...!!!kat

Last edited by kat in the delta; 11-29-2006 at 11:26 AM.. Reason: l
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Old 11-29-2006, 11:25 AM   #18
kat in the delta
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Exclamation kat in the delta(the home of the blues)

cancercare #'s are:
1-800-813-4673
if you cannot get try,,..1-800-521-5401, or maybe 1-888-337-7533 ..someone tell Joe and Christine to listen......kat
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Old 11-29-2006, 01:55 PM   #19
kat in the delta
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Post kat in the delta

I listened to the teleconference and the Dr. said to go to the San Antonio Cancer Sym 2005, and look for chemobrain...I did and it the same rx he recommended. He said in PURE form. Let me know what you all think... "You know we all have to help ourselves and help each other to get through this fog of living between each of the cancer tests that we may be taking every 3 or so months" (my thoughts,at end)........kat in the delta
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Old 11-29-2006, 01:57 PM   #20
kat in the delta
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Thank you Bev....you are very kind.....Look at down to the last thing I wrote before this...kat
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