Chemotherapy and brain damage?

nycjones
nycjones Member Posts: 1
edited March 2014 in Breast Cancer #1
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
«1

Comments

  • nancys
    nancys Member Posts: 323
    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
    nancys Member Posts: 323
    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
  • chemobrain
    chemobrain Member Posts: 1
    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
  • sueholm
    sueholm Member Posts: 205
    nancys said:

    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

    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
    tiger Member Posts: 277
    sueholm said:

    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

    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
    lhakons Member Posts: 26
    tiger said:

    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

    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
    tekgal Member Posts: 35
    lhakons said:

    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

    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?
  • tiger
    tiger Member Posts: 277
    lhakons said:

    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

    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
  • sueholm
    sueholm Member Posts: 205
    tekgal said:

    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?

    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
    lhakons Member Posts: 26
    sueholm said:

    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

    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
    mjdp2 Member Posts: 133
    lhakons said:

    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

    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
    cherdaetwyler Member Posts: 156
    sueholm said:

    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

    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
    cherdaetwyler Member Posts: 156
    mjdp2 said:

    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

    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
  • 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

    This comment has been removed by the Moderator
  • lhakons
    lhakons Member Posts: 26

    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

    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
    cherdaetwyler Member Posts: 156
    lhakons said:

    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

    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
    cherdaetwyler Member Posts: 156
    unknown said:

    This comment has been removed by the Moderator

    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
  • 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

    This comment has been removed by the Moderator
  • cherdaetwyler
    cherdaetwyler Member Posts: 156
    unknown said:

    This comment has been removed by the Moderator

    hi i got to this point and don'y even have the energy to type the letter. later cher
  • pamtriggs
    pamtriggs Member Posts: 386

    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

    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