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Chemotherapy and brain damage?

nycjones
Posts: 1
Joined: Sep 2000

My mother had breast cancer in 1993. She had both breast removed and reconstructed and underwent the regualar Chemo and radiation. She has never fully recovered. She is easy to fatigue and has a foggy mind. She goes to her doctor for yearly (?) follow ups and describes what symptoms she is experiencing. The last visit he told her that they now acknowledge her symptoms and recognize that there are many with these, or similar, problems. He told her that it is currently being documented, but it can be best described as brain damage. I am wondering what, if anything, can be done about this. Did they administer too high of dosages of chemo? What legal liability is there? My mother has not been able to work full-time since this. Any input would be appreciated. Thank you,

Chad Jones

nancys
Posts: 336
Joined: Aug 2000

Hello Chad, What a frightening story. I start my Chemo in about two weeks. I printed your posting and will take it with me to my Oncologist next Wednesday (OCT 04)Then I will post back to you with his remarks. I have not heard of this with Chemo. However, two of my friends, one male and one female, described a memory loss. Nothing real serious, but they did notice it. I will talk with you again next week. Your Friend, Nancy

nancys
Posts: 336
Joined: Aug 2000

Hi Chad, I asked my Oncologist about your mom yesterday. He knows of no studies about Chemo and brain damage. He said he was aware that chemo can and sometimes does effect the short term memory, and make you a little "fuzzy" while going thru treatment, but the brain receives very little of the Chemo. I have read about the brain shield that protects the brain and that is why Chemo is not very effective for brain tumors. There is a lot of good information about the brain on www.harvard edu/patient guide.htm I would suggest you have your mom see a neurologist or a new neurologist and ask more questions. Has she been given an MRI of her brain? Good luck to you and what a good caregiver must be. Nancy

sueholm's picture
sueholm
Posts: 221
Joined: Oct 2000

Hi, I am experiencing what i think is chemo brain....have jsut had third AC....couldnt remember how to open till at store....one morning couldnt remember how to set coffee perc....yesterday told nurse that my son, born 1967, was 30, she had to correct me even though i had verbalised the calculation....and i cant remember people's names, whom i know well.....However, my sister was most reassuring....she said, good grief susan, that is how i am normally! Anyway, i will read more stuff on it. but at the moment i think i would rather be a little confused than not have chemo, so the choice is clear to me. I was always planning to be eccentric in my old age, anyway! Going to wear a purple hat! does anybody else know that poem? much love to you all, susan

tiger
Posts: 292
Joined: Oct 2000

Hey there Sue, yes I have "chemo brain" too, my onco told me that short term memory loss is part of the fun. Sometimes I would open my mouth to say something and it would come out in a jumbled garble, and it wasn't until I was finished that I would realize that what I said made no sense. I also found that about two days after chemo,when I showered,then cleaned my ears, they were really dirty,not wax, but brown goop, and it only gets like that right after chemo. Do you have the same? Apparently there is a "brain blocker" in the chemo so it does not go to your head and effect the brain,maybe its coming out my ears?!!!
Hugs from Tiger xo

lhakons
Posts: 26
Joined: Nov 2000

Tiger:

Did you have AC or CMF? I'm having to choose between the two, and if the problem is cytoxan, you get it either way. But the study I read about was just with CMF, so maybe it's just the MF drugs that cause this. I'd love to know before I have to make the call.

Blessings!
Lisa

tekgal's picture
tekgal
Posts: 37
Joined: Dec 2000

Hi! I had AC (4 treatments) and finished up last May. I notice that I can remember things from BEFORE chemo with no problem -- it is SINCE treatment that I forget things. For example - I had lunch with a friend then totally forgot when I saw her a few weeks later! Very frustrating! Thank heavens we can blame it on chemo, right?

sueholm's picture
sueholm
Posts: 221
Joined: Oct 2000

re AC . Adriamycin and doxrubicin are the same thing. as are Cyclophoshamide and cytoxan. is this not correct, or is chemo bain making me forget? love susan

lhakons
Posts: 26
Joined: Nov 2000

Susan:

You're right. Adriamycin=doxorubicin, and is also called an anthracycline. Cyclophosphamide also goes by the name Cytoxan (a brand name, maybe?).

Blessings!
Lisa

mjdp2's picture
mjdp2
Posts: 142
Joined: Nov 2000

I had 4 A/C and 1 Taxol and felt I was suffering from short term memory losses. For instance, I couldn't remember the name of a fellow I was working with. His name happened to be the same as my son's!! Studies comparing women who had chemo and those who did not over a 10 yr. period showed the group who had chemo had some memory loss. I don't think it matters which type of chemo you had. I figure if the chemo is killing healthy cells, it is bound to catch some of our brain cells, especially since the chemo is delivered via the blood supply. That's how brain, bone, liver and lung metastases occur, thru the blood, right? Margaret

cherdaetwyler
Posts: 165
Joined: Dec 2000

I agree in part,
But the brain has an extra protection which allows very little of what it considers
useless chemicals through,
which is why most ordinary chemo works minimally on brain tumors.
Usually a major high dosage program is necessary for those.
During my years as a depression patient, I realized how much medicine over how
long a time it takes for the brain to respond to medicine. It is also slow to release it
which could cause some memory lapse. As for myself I don't worry about the small
stuff, I just tell people that it is my brain chemicals that are out of whack that makes
me forget their name, or their house address. I save the brain for the big stuff like
learning how to beat this disease.
love to all of you,
cher

cherdaetwyler
Posts: 165
Joined: Dec 2000

Hi Susan,
Yes they are and no your chemobrain is not doing you in.
I think it makes a good excuse for forgetting some of the excess nonsence
that we overload ourselves withl

Just back from my first AC in the newly installed port. What a pain saver. They
always have to use little kids needles to get into my veins and the port was so simple
It still hurts around the implant site and I can feel it in the vein down to my heart, but
so much better.
also all news on liver checks, bone scan are good. it seems as if it hasn't spread
any farther than the prolific fatty tissue under my arms. so well have lots of radiation
there after the chemo.
Since I can't blame my forgetfulness on chemo yet, i guess i'll just have to say it is
brain overload. The oncologist said to stop researching everything, I would get too
confused. Little does he know that he is trying to stop an unstoppable force. I taught
myself botany in the years right after college just because I had to know., I taught my self
to design houses, to the prints, etc, just because. I learned how to program computers
just because my bosses at the time needed someone to do it.
How can he stop me on my quest for knowledge. And I have agreed with him along
the way that this is the best possible treatment given my diagnosis.

Love to you all, and I defy chemo to stop the brain,
cher

cherdaetwyler
Posts: 165
Joined: Dec 2000

Thanks Ellen,
I figure I'll be reading something new on my deathbed and let St. Peter know
about it at the gate. ( :)) I have been a life long learner and I don't intend to let a
little thing like a doctors discouragement on the topic stop me now.

This evening I am going to a watershed meeting wtih a presentation on
mussels ( you know those little clam things that the Native Americans
used to make wampum) because one of my projects this spring is to
co-ordinate mussel counts in the streams near here to see what we need
to do to help make our water healthier for the little things that live there.

Also yesterday's doctors (radiologists) love the research and said the more
knowledge the better. It keeps you calmer and less stressed.

Hey all of you don't worry when I am writing in middle of night. My hubby
had to leave for work at 3:15 to start at 5:15 so I get up and make sure
he gets off with some food and lots of caffeine for the 2 hour drive.

Only a couple more years til he can retire and work at home with me.
I'll love it, although today I am glad he won't be here working on his
horn crafting...it really stinks when you heat the horn to shape it.
Not a good plan for second day after chemo.

love ya, prayers for you and your ministry, cher

lhakons
Posts: 26
Joined: Nov 2000

Cher:

I know you've told me, but what chemo are you on, and how many cycles to go?

I mentioned this by email, but my first is next week -- and I did go with AC.

Soon to be bald!
Blessings!
Lisa

cherdaetwyler
Posts: 165
Joined: Dec 2000

Good morning, Lisa,
I am on AC, my doctor felt it was the only choice considering the advanced
stage of my malignancies, although we found no signs of any past the lymph nodes.
Thanks heavens for small favors.
this is fourth day after first treatment, 3 more AC to go on 21day cycles,
then 4 21 day cycles of Taxol. Then a brief respite before radiology.

It will be fall before I am finished and still then will be on Tamoxifen but
it is worth it.

The Ac isn't bad with all the antiemetics (except my tummy always felt
full on them), only one afternoon and evening too tired to do any thing at
all(I fell asleep reading a smutty romance novel so you know how tired _
and today i feel almost like conquering the world.
I hope sometime tonight to check out that other site you told me about
let you know.
It sounds as if this might get better here.
hugs and prayer,
Did you get you hair cut?
I have not made it all the way through this monster list of postings in days
when my computer decieds to cut out I decide that is enough for that
visit.
I am twisting my saved locks into a bun for Civil War era stuff (Victorian
if you view it that way) which I can just pin into the back of a nifty bonnet
or a morning cap for around camp...no nylon wigs in camp for me,
I'd catch it on fire and melt my entire head. Beside the company I go out with
view me as one of their people who knows how it should be done and I will
always try to stick to things that were available in 1860.
later, cher

lhakons
Posts: 26
Joined: Nov 2000

Cher:

You've hit on one of my HUGE pet peeves with doctors. My initial onco was always telling me not to "confuse" myself or "scare" myself with "too much" information. I realize that most folks are probably just overwhelmed with having the disease and just want the doctor to tell them the best way to go. But for me, information is not confusion or scary. It's security. If I'm going to go through something unpleasant and scary, I need to understand. Otherwise, I feel in the dark and that's a whole lot more scary. "Because I said so" just doesn't cut it with me. I'm having to learn to let it be enough when God says it, but everyone else gotta EXPLAIN!!

Blessings!
Lisa

cherdaetwyler
Posts: 165
Joined: Dec 2000

Yeay, Lisa,
I totally agree.
Especially when my family doctor's office called yesterday to let me know that my first surgeon
left surgical clips of some sort both of my masectomy incisions and and I need to find out if my second
surgeon knows agbout them and has removed them. If not it will mean more minor (HAH!)
surgery to get them out since my incisions are completely healed (the clips in there may be
why she left 1 inch lone unstitched areas near the ends of the incisions but never told me
that anything was in there. I heal so fast and the entire incision has lost all its scabbiness, including
the bigger unstitched spots.
They inserted my port on Monday. I can feel the tube inside my vena cava, it wiggles when i
cough. feels icy if i drink really cold stuff.
1st chemo was tuesday, i thought they would let my hubby in there with me but just onco nurse
I followed one of the tips on how to keep from getting burnt mouth effect from the adriamycin by
sucking ice chips.
just durng actual infusion of adriamycin/ IT WORKS!!! food tastes normal.
in fact my ginger tea which my son gave me tastes too much normal. Hair stands up on my head, it tastes so gingery.
they gave me an approximate fall out date for said hair (probably 15 to 20 days from treatment)
I am cutting extra chunks of hair for bangs and other little hair pieces to velcro into hats etc.
at least I'll have them if i want to use them. I am sewing lots of great hats and scarves this week.

But I am noticing one wierd side effect of the antinausea drug zofran, it makes me tipsy for a while after i first take it,
like drinking 2 mixed drinks in a row...worth it since it keeps the nausea at bay.

I have no intention of limmiting my research. And this has given me more strength to study some of
the other less scary but equally important in my life issues. Like what is my long term use of anti=depressants
going to do to my liver since they have to do liver tests every six months when on it?

I may have to soon return to only my own will power and a few gentle helpful herbs to keep my serotonin straight.
luv yah, cher

cherdaetwyler
Posts: 165
Joined: Dec 2000

hi i got to this point and don'y even have the energy to type the letter. later cher

sueholm's picture
sueholm
Posts: 221
Joined: Oct 2000

Was finally reading this string, and saw all the discussion about research and depression. I too, researched like crazy, and do not regret it. Felt I had to know the precisie dimensions of the monster so that I could line up my sights. but I have found oncos very plreased that I am aware, so that is nice. Since they respect where I am at, I have much more respect for them. As for the depression I came across one study that showed that women with a history of depression have a much higher incidence of breast cancer. so I thought you might be interested in that fact. A sense of joy, was found, in another study to correlate with survivability. And being emotional during treatment boded well for fewer doc visits and better emotional outcome after treatment. therefore, I am going to do very well!!. love susan

lhakons
Posts: 26
Joined: Nov 2000

Sue:

Good information! Thanks!

Does anybody else find the format of this forum terribly confusing? Your new note was nested in with much older notes.

Blessings!
Lisa

mjdp2's picture
mjdp2
Posts: 142
Joined: Nov 2000

My friends cheered me up by emailing me jokes during my chemo. That brought me great joy and helped me get thru my treatments. I also asked for email rather than phone calls as I was too weak to get to the phone. I guess I should be thankful that I am an emotional person. Margaret

pamtriggs's picture
pamtriggs
Posts: 408
Joined: Sep 2000

Dear Lisa

See my note on forum design earlier in the page. Tony (our webmaster)is working on a much more user friendly design & it is currently being tested so hang on in there. Love & hugs. Pam

cherdaetwyler
Posts: 165
Joined: Dec 2000

Hi Susan and all,
I too read at least a new or science mag afticle on the study of depression
paitents and cancer. I do think getting emotional helps, because when
i got so mad at my body for being tired I slept and woke up ready to run again.

I think a fighting spirit helps so much here.
Also cheerfulness and humor.
more later, cher

pamtriggs's picture
pamtriggs
Posts: 408
Joined: Sep 2000

Hi Cher. Pam here. You probably know about St.Johns Wort for use as an anti-depressant but did you know about a natural product called 5HTP (Nature's Way produce it in US I know) that works on your Seratonin levels. Maybe this will be of help if you cannot take normal anti-depressant medication. Best of luck with your cheom. Praying for you. Love & hugs. Pam

cherdaetwyler
Posts: 165
Joined: Dec 2000

Hi again, Pam,
Yeah I know about 5HTP, I used it for a while. This week I just skipped taking
my regular ssri for 2 days of the time I was on the Zofran (that only lowers
the blod level of that particular ssri by 75%) then yesterday I started back on it.
I feel great other than having to fight to get my water., and the other problems
tjat mining has caused our housees. It is depressing to see a gorgeous
swirled plaster cieling cracking into bits. the man who did it cried when
I told him what was happening to it. He had put it in for his mother about
10 years ago and she is dead now. We bought her place and love it here
but the mining is devastating not only to the land and buildings but to the spirit
of people who watch their lifetime work fall apart.

Pam, my colostrum says take on an empty stomach. Do you know if that
is really necessary since it is dificult to find twice a day that I have an
empty stomach.

thanks for all, cher

pamtriggs's picture
pamtriggs
Posts: 408
Joined: Sep 2000

Dear CHer
I take my colostrum as soon as I get up before I have my first belt of caffeine. I don't eat breakfast for about another hour (I have to get up early as hubby does as he starts early in morning - he's an engineer - and its a good chance to chat B4 he leaves.) Then I take the second dose in the middle of the night as I always wake up at least 4 times a night as I get so uncomfortable with the spine mets. That seems to work for me. I asked my naturopath & she said at least an hour before a meal is a good compromise. Best of luck with the fights with the water company. & your chemo. Love & hugs. Pam

tiger
Posts: 292
Joined: Oct 2000

I had neither, I had eight months of Cyclophosphamide/Doxarubicin/5FU, then six months of Taxol/Herceptin, and now I will do only the Herceptin once a week until September.
Tiger

chemobrain
Posts: 1
Joined: Nov 2000

I have also experienced memory loss and some fogginess. We all used to joke, as we were receiving our chemotherapy, about the chemobrain we were all experiencing. I have done some research and they are just starting to investigate this not uncommon side effect. Here is some initial information.While cognitive deficits have been found to occur in some cancer patients as the result of adjuvant (CMF) chemotherapy, this issue is not addressed with patients as a potential side effect of this course of treatment. Recent research has identified that a number of patients who have undergone adjuvant chemotherapy for operative primary breast carcinoma have reported impaired cognitive function, sometimes even years after completion of therapy. These findings have led to the investigation of the possible role of cytostatic treatment as a causative factor.

Preliminary results of investigations into the role of adjuvant CMF chemotherapy have demonstrated the patients treated with such therapy have a significantly higher risk of late cognitive impairment than breast carcinoma patients not treated with chemotherapy. The objective of adjuvant chemotherapy is to cure. However, with the potential for significant cognitive deficits, recent findings indicate the importance of evaluating impaired cognition as a side effect of chemotherapy.
Let me know if you want more info. The main researcher of this issues is Frits van Dam at the dept of Clinical Psychology, University of Amsterdam.
I feel very strongly that this issue needs to be discussed with cancer patients, as some of us were concerned we had brain tumors, were getting alzheimers.... hope this helps. I can refer you or your MD to articles discussing this issue

Scribelle
Posts: 2
Joined: Jul 2010

I totally agree with you! This needs to be researched and communicated to the patient!

I am on tamoxifen. I have problems finding words, am easily distracted, and basically similar to someone with ADD. I though it was my own inefficiency until I read an article describing new information on tamoxifen that damages the "executive functions" of the brain. If I had known this, I still would have taken the medication, as it is still better than cancer, but I would not have beaten myself up for "stupidity" had I known. I had been developing a future as a writer, but now words just blank out even in conversation.

They are just acknowledging that tamoxifen also causes chemobrain, so I suspect they will discover more as things go on.

Lighthouse_7's picture
Lighthouse_7
Posts: 1566
Joined: Jan 2010

Chemo Brain is real. I just read about it on the Cancer site. They send me updated info via email. They actually said that they have no real explanation for why it happens but they know that it does.
But and the big But is, it i temporary (thank goodness) because I was never told about this and one day at my chemo session I got very upset because I couldn't remember any of the nurses names. One very nice nurse leaned over and said to me, "Don't worry about it honey, it's just chemo brain." Boy did I feel better! At least we have an excuse...LOL

I joke with my grown kids and tell them that I'll be using this excuse for a long time.

Christine Louise
Posts: 429
Joined: Feb 2010

Chemo brain is very real. I was just saying to my husband ... what? Um ...I foget ...

(No disrepect meant. I really am struggling with this but trying to stay light-hearted.)

carkris's picture
carkris
Posts: 4505
Joined: Aug 2009

it defiantely exists but I feel its getting better. so there is hope. I finished chemo in Jan.

Flakey_Flake's picture
Flakey_Flake
Posts: 130
Joined: Jan 2010

Hi Chad,
Welcome to the site. It is a good place, and hop you will visit often.

Chemo Brain is VERY real. Of course, my onc never mentioned it when describing what I might be going through. I've found there is more information left out, than there is given. It is a road full of surprises.

I though I wasd dealing with my intensive AC therapy quite well. I rested when I felt the need, and did what I felt I could. I felt kind of fuzzy, but put it off to fatigue. Then one day I had to write a check. I found myself looking at my check book not knowing what to do. Sure fatigue, right? Then I found myself at my computer looking at icons, and wondering what they were for. Then I found I couldn't put a sentence together. I was trying to advance myself with a BS in information technology when I was dx. I tried to keep up with my work, but found it was taking me 8 hrs to post a two paragraph comment. I finally had to admit to myself that I was suffering from a serious congnitave impairment.

I was in tears. I thought my mind was actually leaving me, and I would be doomed to live the rest of my life as a locked up impairment to society drooling all over myself. I called my clinic in a panic. If I were to loose my mind, I would just as soon loose my life. When my onc's nurse finally called me back (of course, you have to leave a message, and then sit by the phone like a dog laying by it's dish) she was astounded I hadn't heard of chemo-brain. Well, I wonder how she expected me to hear about it when the doc isn't telling.

For some reason, I can't recall why, I had an appointment with my family doc a few days after. I was still in tears. symptoms were worsening. I would look at simple things I dealt with daily. I was forgetting how to turn a light swith on. I didn't know how to make coffee. My family doc was also astounded I hadn't heard of chemo-brain. She prescribed a daily dose of multi-B vitamins, along with a strong prescribed dose of folic acid.

That all occured about eight months ago. (not really sure about the time thing. I am finding my short term memory may be improving, but time escapes me for some unknown reason.)

I have since given up on obtaining a BS is anything, unless BS is a acronym for B*** S***. My memory has lapsed into a joke. Mostly of my origin, but no one seems to believe that I am not what I used to be. My son will alert me when I am repeating myself. That is my only barometer. Most people just put up with it. They just figure that Sharon is a bit loopy today, so just humor her. It would be so much better if they would just tell me. I guess they are trying to be kind.

So, Chad, don't ever believe there is a blood/brain barrier. I have researched chemp brain alot. All I can remember io that there is supposed to be a barrier between the brain, and what it will allow to come in through the blood. I've read alot. Remember little.

It is a tough choice. You may go through chemo without a fart. Each one of us are different. Even if I had known the symptoms they didn't tell me about, I think I still would have done it. It is just nice to know what to expect. But like my family doc said, if they put every possible side effect down on paper it would be a thousand pages.

My vote (if it means a squat) is go for a life. Even if you are cursed wiht chemo-brain, it is far batter than the other way. I find that I enjoy life far better than I ever would have if I hadn't went through this journey.

You have to remember, life can change in a second. You have the potential to find happiess at any turn. look for the happiness. forget the bummers. It's there, but have to look. Even if che possibility of chemo brain is in your future, don't give up. The good Lord gavre you life, and He will also decide when it should be taken away. You cannot defeat His wisdom. Life is gift. A great gift. You don't know what you can do until you give it a try. So just screw the chemo brain. You have achance at life, which is priceless. If you end up a drooling slob, I promise I will come visit you, and I will sing endless songs you would probably give up your dessert for me to stop. Think about it Chad! (Really just joking, I am not a stalker - don't have the energy or the memory. Not having a memory ain't so bad. Every day is anew experience/

Stay well friend. Don't be afraid. God looks after the sick.

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